Hi everyone. :) It's just me here with some medical updates on how Lena is doing. Tuesday was our "Medical Center Day". Since school just started on Monday, we didn't want Lena out multiple days so scheduled all of our upcoming appointments on one day, this past Tuesday. We began the day by arriving down in the Medical Center around 8:45 at Scurlock Tower. Lena was supposed to get fitted for her new glasses that have a ptosis crutch attached. She had picked out the glasses last Friday but the crutch has to be custom fitted to her eyelid. Since surgery on the eyelid is not an option right now and if the eyelid doesn't get opened she will lose her vision, we decided to try this out. I'll post a picture tonight or this weekend of Lena in her new glasses. Christy's Optical made the crutch and attached it to Lena's new glasses. She is the youngest patient they had ever worked with for a ptosis crutch before. Of course, they adored her and treated her like a princess. Basically a ptosis crutch is a wire (like the one used with braces) that curves around and attaches to the glasses at both ends. When worn correctly, it will 'grab' Lena's eyelid, pulling it up towards her eyebrow so that she can use that eye to see.
We finished this visit around 10:35 or so and were due at the Neuro Opthalmologist at 10:45 down at Texas Children's Hospital. So we hiked out to the car and headed off. Britt dropped us at the doors so we could run up and try to make it on time. To get into this appointment on this date, we had to be squeezed in between other appointments. If we choose not to do this, we wouldn't get in until mid-September so we decided to go for it. If you're more than 15 minutes late, they cancel your appointment and ask you to reschedule. So, we really really didn't want to miss the appointment! Well, even though we made it on time, we didn't see the doctor until 12:15. Uggggggh! Dr. Edmond was surprised to see Lena with her new glasses being worn. Apparently she hadn't seen a child that young using glasses with a ptosis crutch either. Lena's vision has definitely started to deteriorate in this eye and is now at 20/50. It was 20/40 only 2 weeks ago. We talked about options and the upcoming surgery. Basics- Lena needs to wear a patch on her strong eye for about 2 hours each day to strengthen the other eye and get the brain to "turn it back on". Also, because four of the six muscles attached to her eye are damaged, the eye is deviating to the outside. This is what causes the double vision. So, Lena will have another surgery on September 21st to align her eye frontward. The remaining muscles will be attached to the wall so that her eye will no longer have mobility. It will remain fairly stationary to look straight ahead. This is the most nonevasive correction there is but if for some reason it doesn't work, there are alternative options to consider. We figure we're due some positive feedback so are planning for this to be the one to get it done. :)
One thing we found out later that evening from a phone call from Dr. Edmond was that she is scheduled to speak at a symposium for about 1500 doctors and would like to use Lena as a case study. The rarity of utilizing a ptosis crutch for a young patient like Lena makes her good doc talk! I strongly believe in educating others and helping whenever you can so I easily agreed. However, while I was reflecting later that night, I realized that if she was going to talk about Lena's case, she will probably be extra careful with my baby and do the absolute best job she can possibly do. This gave me so much comfort. I'll take everything I can in terms of making sure Lena has the best care possible and this seemed to fall into our lap. So- good news there.
We finally got out of this appointment around 1:15 and had our last appointment at MD Anderson at 2:30. However, we needed a food break. I was craving some serious caffeine too.
So, off we ran to grab some Taco Cabana to eat on our way. We were actually hoping that if we got there a little early, we might get in and out. Yeah, wishful thinking and a good lesson to us. We arrived shortly after 2:00 and were sent back to an exam room around 3:00. We met with the nurse practioner for about 30 minutes and then waited for the doctor. And waited. And waited. He finally showed up around 4:15. This doctor is a neuro-oncologist that specializes in genetic disorders/syndromes. He assessed Lena as well as both Britt and myself. After an hour, this is what we got out of the visit. (BTW- I'm sure we were told a lot more information but at that point we were brain dead and couldn't process too much more. On the other hand, Lena was full of energy and cleaning out the sink in the patient's room! I think she developed an almost unhealthy obsession with hand sanitizer on this day!)
Anyhow, basics... because Lena had a tumor grow in such a rare location for a child, there is the possibility that she has a genetic syndrome relating to chromosome 22 that might mean she would have reoccuring tumors growing in this area of her brain. On the other hand, it might be a spontaneous mutation- a one time only deal. The only way to know for sure is the genetic testing. If Lena was determined to have this deficit in chromosome 22, then both Britt and I, as well as Naia and Kira would need to be tested. Apparently the chances of another multiple (one of her sisters) having the same syndrome would be increased because of their development happening at the same time. Although we want to know, no- we need to know, whether this is something we will be facing repeatedly or if we can focus on just managing through the here-and-now, it's going to be tough. The questionnaire and other information gathering sessions about our genetics will be long and arduous. Sending Lena's samples off to a genetics lab will cost anywhere from $3000-$5000 and it isn't covered by insurance. So, I don't think it's eally optional but it also isn't our priority. We need to help Lena get through this next surgery in September and then in early October we begin the MRI testing again to assess whether the tumor is regrowing and at what rate. So, yes it's important but not as much so as some other things on our plate right now.
Okay, I think that brings you all up to date on the medical appointments from Tuesday. Now I'm going to share a little bit of heart breaking news. Lena was so much more confident going to school on Wednesday after she got her new glasses. I wouldn't say she was thrilled or excited but she was so much more ready than she was on Monday. Although she still held tightly to my hand walking in, she had her head held up high and was looking at the people around her and making eye contact. Unprompted, her sisters had told her she looked amazing in a multitude of ways on the way to school. (I was so damn proud of them!) She was just obviously more confident and ready to face the world.
At lunch that day, yesterday, Lena was sitting next to her friend from Wee Care, Kennedi. Another little girl at the table across from then turned around, pointed her finger at Lena and said, "Ugly!" I could just picture this scenario in my mind when Britt told me about it. I inhaled sharply and thought I was going to throw up. I knew it. He knew it. We knew she would get hurt. I just can't believe it happened on the day when she was finally able to hold her head back up. Lena is smart and caring. She's kind and full of heart. I know this hurt. I also know that she wouldn't do anything about it. She probably hung her head and stopped eating. However, Kennedi wasn't having any of it. Kennedi immediately got up and went to talk to the nearest cafeteria monitor/teacher. I don't know what all happened then except that the adult talked to the little girl and I hope, really hope, Lena learned a lesson. Not about how cruel people can be which I'm sure she learned very quickly, but I hope she learned that true friends give you strength. True friends love you no matter what happens to you and stand up for you. I owe Kennedi an extra special present for the next holiday!
You know we talked to Lena about what happened as we do everything but similar to Monday, we learned something else through this incident. We cannot possibly protect her at all times. The best we can do is build her confidence when we are with her, teach her and her sisters how to react and give them all the tools they will need to navigate through life. We will use the little girl's comments to teach our children how harmful it can be to talk about people who are different in any way. I know it hurt Lena. I felt like I had failed her. I know Britt did too. We are trying so hard as parents to work our way through this but nothing prepares you for it. I know I'm trying my best each day and that some of the decisions are excruciating. I really would like for someone to give me the "How-To Manual" now for raising three daughters. I hope you aren't just hiding it from me! I cry for Lena but I also smile for her. She is so loved and is such an inspiration to me and those who know her story and see her strength and resiliance. What a gift for her when she grows older when she realizes what an impact she's made on others' lives.
To end on a positive note- Lena woke up this morning and easily got ready for school. She was ready to hop right back on that wagon. Tonight after bathtime, Lena, Kira and Naia were all simultaneously singing We are the Champions while drying off and getting their hair brushed. Yes, imagine all three of them wet, naked and singing, "We are the champions my friends. And we'll keep on fighting 'til the end. We are the champions, we are the champions of the world...." Yes, they are. :)
Love you all. Thank you for keeping Lena in your thoughts and prayers and again, thank you to the Outley staff for taking care of those that are most precious to me. Hugs- Holland
Thursday, August 27, 2009
Monday, August 24, 2009
First Day of First Grade
I didn't think I'd be posting today. Tomorrow we have three doctor appointments down in the Medical Center- one at Scurlock Tower, one at Texas Children's and one at MD Anderson. I figured I'd post in one of the days following to let everyone know where we go from here. What I didn't expect was that I'd have a complete meltdown this morning at the girls' elementary school.
We knew today was coming and I knew that Lena was going to be nervous. Over the past week, I've had conversations with her and her sisters about school beginning. We talked about how they are first and foremost responsible for taking care of one another. That's always been our motto. When I dropped them off at school each morning last year I'd ask each girl in turn, "Kira. Who are you going to take care of today?" She would reply, "Lena and Naia." "Lena, who are you going to take care of today?" Her response, "Kira and Naia." And then I'd ask the third, "Naia, who are you going to take care of today?" "Kira and Lena," would be her reply. So, this was really no different except we discussed how people might treat or react to Lena's appearance. Granted, I didn't bring this up. The girls brought up the idea of someone making fun of her so that led to these discussions.
I also spent time talking with Lena about how children or adults might ask her questions about her hair, her scar, her eye. We role-played different responses she might give which included:
We knew today was coming and I knew that Lena was going to be nervous. Over the past week, I've had conversations with her and her sisters about school beginning. We talked about how they are first and foremost responsible for taking care of one another. That's always been our motto. When I dropped them off at school each morning last year I'd ask each girl in turn, "Kira. Who are you going to take care of today?" She would reply, "Lena and Naia." "Lena, who are you going to take care of today?" Her response, "Kira and Naia." And then I'd ask the third, "Naia, who are you going to take care of today?" "Kira and Lena," would be her reply. So, this was really no different except we discussed how people might treat or react to Lena's appearance. Granted, I didn't bring this up. The girls brought up the idea of someone making fun of her so that led to these discussions.
I also spent time talking with Lena about how children or adults might ask her questions about her hair, her scar, her eye. We role-played different responses she might give which included:
- I had surgery. (Although we also talked about how a lot of kids wouldn't understand what this meant.)
- I got sick.
- I don't want to talk about it right now.
We figured those would pretty much cover what she might want to start with and if she wanted to give more information, she could. She knows a lot about what's happening to her.
Last, we had several conversations regarding wearing her sunglasses to school. This was the toughest. Her dad figured if she was allowed by the school, we should let her. I felt fairly adamently against this. This ended up being a decision I debated all day in my head today. Yes, Lena is supposed to get glasses that will have an attachment that will pull up her eyelid when she is wearing them. Yes, Lena will have surgery to place her eye forward so that she doesn't have double vision. Yes, we are taking steps in hopes that Lena will be able to see out of her left eye. But, she won't always have her glasses. This is who she is. This is her life and this is what she needs to learn to accept so that she can accept all that she is and all that she can become. I both want to shield her and also want to give her the tools she needs, including confidence, so that she has self-acceptance. I think this will be the best thing we could do for her in the long run. I imagine she won't have the surgery for a while and will need time to recover before wearing her new glasses so should we allow her or encourage her to wear the sunglasses at school during that time? Should we start treating her differently and giving her special treatment? Should we provide that means of allowing her to hide who she is? Tough questions and there probably isn't a right or wrong answer. All I know is that I feel fairly strongly that she accept that no matter what, she is beautiful, intelligent and my angel.
So, after all of these talks, I thought we were ready to begin first grade. I knew it might be a little tough this morning but I had no idea. As soon as we were in the car on the way to school Lena told me her tummy hurt, her head hurt, everything hurt. I knew she was anxious and worried. When we got there she gripped my hand as we walked down to the cafeteria. Once there she kept her head bent down with her chin towards her chest and wouldn't make eye contact with anyone. Once seated, she turned her body so the child next to her couldn't see her. My heart was breaking. My tough brave child looked completely defeated and it was only 7:30.
I took the girls to their homeroom where their wonderful teacher, Ms. Torres, waited for them and greeted them with smiles and hugs. I got Naia and Kira settled but Lena wouldn't let go. She told me she didn't feel good and if I let her come home, she promised to come back to school in a few days. I took her into the hallway and held her close and reminded her of all we had talked about. I promised her it would be all right. I was going to be back around lunch to help out so told her I would pop in to say hello. She didn't cry. She didn't whine. She just asked me not to leave her. That was all it took. From years in education, I know the best thing to do is to make sure your child knows you love them and that they're safe. And then you leave. That's what I did. I hugged her and let her hug me. I kissed her and told her I loved her. I told her that her sisters would be near. And then I left.
I barley made it to the front office before the tears started spilling. I walked by the principal, Ms. P., and asked if I could go to her office. Before I even got through the door, I was melting down. My heart was just hurting so bad. My little girl was hurting and I knew that this would be one of the worst days for her. But I also knew that she would make it through. She would be okay. The staff at Outley will keep an eye out for her. Pam went to check on her. Her teacher would get her engaged in activities and build a community within the class. I knew this but it didn't stop me from just losing it. And I did lose it... completely.
There wasn't much to do except accept and spend my day wondering if I had made the right decisions. There were moments when I wasn't sure and thought that on Wednesday she could wear her sunglasses if she was still that worried. But then I knew, it was the only choice I think I could live with right now. I want her to stand tall. I want Lena to reach her full potential and I want her to be a strong young lady and woman when she grows up. Do I want my 6 year-old to be hurt? No, but she will be at some point. I don't want her to get teased but eventually that will probably happen too. I don't want anything bad to ever come near her, Kira or Naia. But as a mother, I know that it isn't possible to place them in a bubble. She is in a wonderful environment surrounded by people who love her. She has friends in her classroom as well as her sisters. It didn't make it any easier to get through the day but I did. And you know what? She did too. I don't for a minute think it was easy for her and it was probably harder facing her peers than most of what she went through at the hospital but she didn't cry- not once. She was happy to leave school for the day when I picked them up but she wasn't so upset or sad that she complained. She knows she'll be going back on Wednesday and she's ready. She told me she really liked her first grade teacher so, "Thank you, Ms. Torres." I know as teachers we all want to make a difference and it isn't always easy to tell if we do. You did today. You not only made a difference to Lena. You made a difference for Kira, Naia and their Mommy.
I'll still write in the next few days when I get a chance but I want to share something that goes along with the story. I lost it today and it was okay. I've been a crying mess before and I have no doubt I'll have more to come. But it was good. There's always a lesson to be learned. I'm not a pretty crier. My eyes get bloodshot and I'm just a mess. But I don't mind so much now. I think if my child went through all that and I didn't cry, that would make me worried. If I didn't second guess my decisions, that would be a mistake along the way. If I didn't want to protect and save her, that would mean my heart was closed. So, it wasn't fun and I don't want to do it again at the school but I'll give myself this one. It was bound to happen sooner or later. :)
Saturday, August 22, 2009
Friends- Part 2 Actions Speak Louder Than Words
There's a phrase we've all heard... "Actions Speak Louder Than Words." I'm not sure how often we pay attention to this but when you think about it, this phrase has been repeated in different forms and genres through time. I've been talking to a really good friend about this recently. It comes into play in a lot of different areas of my life but right now, through everything that is happening, it counts- a lot.
The musical group, Berlin, wrote a song in the 80s called "No More Words" about a similar idea.
Randy Pausch, professor and lecturer from Carnegie Melon, talked briefly about this concept in his "Last Lecture: Really Achieving Your Childhood Dreams." If you haven't read his book or seen the video of the lecture on You Tube, it is well worth the time. He has since passed away from pancreatic cancer but the words he has chosen to leave behind for his children are powerful. At one point, Pausch talks about advice he wants to leave for his daughter when she is older.
It took me a long time but I finally figured it out: when it comes to men that are romantically interested in you, it's really simple: just ignore everything they say, and only pay attention to what they do. It's that simple. It's that easy.
Again, same idea in a different scenario.
So, what I'm learning about while reflecting and sharing ideas back and forth with my friend is this: I've learned a lot more about the people around me from the actions that are taken during this period of our lives. The words given are comforting and uplifting. They are heartfelt, sincere and full of love. The words mean something and show me how much we are on people's minds.
However, the actions of the people in our lives touch my heart and soul. The hugs shared, the time spent praying and thinking of us, the gifts of love... these actions are often what gets me through day to day. It isn't what I'm given or what my daughters might receive that matter, it is the love behind the actions. It is the idea that a room full of co-workers would stop and take the time to send us love and prayers. It is the thought and concern that took place for the people at Lena's elementary school to welcome her on Meet the Teacher Night that eased her worries about starting first grade next week. It is the tear falling down someone's cheek when they tell me they've been worried about us, it is the action of my sister taking my other daughters that allowed me to focus on Lena, it is the person who offered to bring us food for our family at the hospital whom we had never met, it is the basket of loving gifts that people joined together to create for Lena, it is my mom's office that put together a bag of all things "piggy" for Lena to make her smile. Oh, the list goes on.
Never, never have I had so many people come into my life and offer what has been offered to us recently. The actions of our family and friends make me feel like the richest person in the world. We are okay. We are moving forward and staying on track with what we have to get done in the next few months. We're not anywhere near the point where we aren't scared to death, worried about Lena's future or forgetting that the tumor is most likely going to grow back. We're in the midst of frantically trying to find a way to get her eyelid opened so she doesn't lose her vision. She will have surgery again soon on her left eye. We're not nearly close to being done. But we are okay. We are loved and cared for. Every hug, every email, every card means something to us. Every action taken with us in mind is a part of this adventure and a part that matters. Although I'm not sure how well I've expressed my gratitude to each one of you that has taken the time to send me a note letting me know we are in your thoughts, please know that I do appreciate it. I feel it all and share it with the girls. They are learning that people are good and loving and that those who care about you, will step up, will take the time, will offer what you need, when you need it most. That's a life lesson that they won't soon forget.
To my friend... I hope that every day I show you how much you mean to me. I know some days I just tell you but I hope that mostly, my actions speak louder than my words.
Next Tuesday, we will have three different appointments in the Med Center relating to Lena's eye, upcoming surgery and begin some of the testing to find out if she might have a genetic syndrome related to tumors. When I have the chance, I'll update the blog letting everyone know how the appointments went and where we go from here.
Love you much. xoxoxoxo Holland
The musical group, Berlin, wrote a song in the 80s called "No More Words" about a similar idea.
Randy Pausch, professor and lecturer from Carnegie Melon, talked briefly about this concept in his "Last Lecture: Really Achieving Your Childhood Dreams." If you haven't read his book or seen the video of the lecture on You Tube, it is well worth the time. He has since passed away from pancreatic cancer but the words he has chosen to leave behind for his children are powerful. At one point, Pausch talks about advice he wants to leave for his daughter when she is older.
It took me a long time but I finally figured it out: when it comes to men that are romantically interested in you, it's really simple: just ignore everything they say, and only pay attention to what they do. It's that simple. It's that easy.
Again, same idea in a different scenario.
So, what I'm learning about while reflecting and sharing ideas back and forth with my friend is this: I've learned a lot more about the people around me from the actions that are taken during this period of our lives. The words given are comforting and uplifting. They are heartfelt, sincere and full of love. The words mean something and show me how much we are on people's minds.
However, the actions of the people in our lives touch my heart and soul. The hugs shared, the time spent praying and thinking of us, the gifts of love... these actions are often what gets me through day to day. It isn't what I'm given or what my daughters might receive that matter, it is the love behind the actions. It is the idea that a room full of co-workers would stop and take the time to send us love and prayers. It is the thought and concern that took place for the people at Lena's elementary school to welcome her on Meet the Teacher Night that eased her worries about starting first grade next week. It is the tear falling down someone's cheek when they tell me they've been worried about us, it is the action of my sister taking my other daughters that allowed me to focus on Lena, it is the person who offered to bring us food for our family at the hospital whom we had never met, it is the basket of loving gifts that people joined together to create for Lena, it is my mom's office that put together a bag of all things "piggy" for Lena to make her smile. Oh, the list goes on.
Never, never have I had so many people come into my life and offer what has been offered to us recently. The actions of our family and friends make me feel like the richest person in the world. We are okay. We are moving forward and staying on track with what we have to get done in the next few months. We're not anywhere near the point where we aren't scared to death, worried about Lena's future or forgetting that the tumor is most likely going to grow back. We're in the midst of frantically trying to find a way to get her eyelid opened so she doesn't lose her vision. She will have surgery again soon on her left eye. We're not nearly close to being done. But we are okay. We are loved and cared for. Every hug, every email, every card means something to us. Every action taken with us in mind is a part of this adventure and a part that matters. Although I'm not sure how well I've expressed my gratitude to each one of you that has taken the time to send me a note letting me know we are in your thoughts, please know that I do appreciate it. I feel it all and share it with the girls. They are learning that people are good and loving and that those who care about you, will step up, will take the time, will offer what you need, when you need it most. That's a life lesson that they won't soon forget.
To my friend... I hope that every day I show you how much you mean to me. I know some days I just tell you but I hope that mostly, my actions speak louder than my words.
Next Tuesday, we will have three different appointments in the Med Center relating to Lena's eye, upcoming surgery and begin some of the testing to find out if she might have a genetic syndrome related to tumors. When I have the chance, I'll update the blog letting everyone know how the appointments went and where we go from here.
Love you much. xoxoxoxo Holland
Friends- Circle of Prayer
I haven't posted much lately because there hasn't been much happening out of the ordinary. We've been busy with me going back to work, the girls have been at church camp and we're crazily trying to get everything ready to begin first grade on Monday. But, a couple of things have happened that I thought were well worth sharing or at least writing about so that I don't forget them and can share them with Lena, Kira & Naia when they're old enough to understand everything being shared in this blog. Both have to do with friends and what you get out of a conversation with a good friend and what you do with what you get.
First of all, I had a friend that I've known since my first year teaching in Alief (oh my, 17 years ago...), Becky, stop by at work the other day as she was picking someone up. We spoke briefly about how Lena was doing, the power of prayer and faith and just the overall idea of what you learn when it seems life is at its toughest. One thing we discussed had to do with the love and strength of the people I work with. On the day of Lena's surgery, I had heard that some people at work might get together and have a moment of silence or a time for a quick prayer for her health and recovery. I knew this but at the time, my mind was just focused on the moment and how much I love my daughter as well as trying not to break down in the waiting area at the hospital! I didn't really think about the logistics of it even after a few other people mentioned it. I'm not sure why but when Becky stopped and brought it up the other day, it hit home. I was actually able to visualize what had happened during those moments even though I was in my own bubble at the hospital just trying to stay strong and full of faith. She told me about how a group of people came together, stood in a circle, held hands and prayed for Lena at the moment that she was going into surgery to have the brain tumor removed. I thought I was going to just have to sit down and cry right there in front of the administration building. Why hadn't I understood before? Why didn't I have the full picture? I may not have known exactly what was happening but I'll tell you something. I felt it. I just knew when I was waiting, and waiting, and waiting, that there were waves of love being sent to my daughter. Then, and now, I have had the sense that we are in a bubble of love and strength. So many people have asked me how I stay so strong or mentioned that they aren't sure they would have that strength. The strength isn't coming from me. I'm just the one who is helping Lena and my other daughters see the love and strength. I am in a bubble of love from people I love, people I care about and people we have never met. I don't even begin to try to understand it but it is there.
Most of you know that although I have faith, my beliefs don't lay with one church or one religion. I believe in love, hope and the goodness that's in the world. I believe in God and believe in prayer but I equally believe that the way we act towards one another is a true sign of our religion and beliefs.
Back to my story... what was amazing about this conversation with Becky is this. I never told Lena. I told her how people cared about her and wanted her to get better. She knows that the people I work with put an amazing basket together for her. She heard and I think understood that. But I didn't tell her about the prayer circle. I don't know why. Maybe I didn't think she'd understand or maybe I was worried about how she'd react. For whatever reason, I didn't. Until after I talked with Becky. Friday, Lena and I had an appointment down in the Med Center. On the way down there, I told her. She had a look of complete 'wonder' on her face. Her first questions was, "For me?" Then she asked about what they said to God and did I see it. I had to explain that I was at the hospital with her so no, I wasn't there. She only asked a few more questions but they were all so heartfelt and I know that telling her about this incredible gift made her feel so loved and cherished. We had just left my work where everyone was so accepting and loving towards her so I'm sure she was picturing all of these people in her mind, holding hands and sending love to her. What a gift the prayers were but what a more precious gift because she now knows.
I have a friend to thank for bringing that back to me and allowing me to feel the act of love in a way I could then share with Lena. If you know Becky, you know that she's got one of the biggest hearts in the world. She opened it to me that day by showing me her 'wonder' at what my Alief family gave to me and mine.
First of all, I had a friend that I've known since my first year teaching in Alief (oh my, 17 years ago...), Becky, stop by at work the other day as she was picking someone up. We spoke briefly about how Lena was doing, the power of prayer and faith and just the overall idea of what you learn when it seems life is at its toughest. One thing we discussed had to do with the love and strength of the people I work with. On the day of Lena's surgery, I had heard that some people at work might get together and have a moment of silence or a time for a quick prayer for her health and recovery. I knew this but at the time, my mind was just focused on the moment and how much I love my daughter as well as trying not to break down in the waiting area at the hospital! I didn't really think about the logistics of it even after a few other people mentioned it. I'm not sure why but when Becky stopped and brought it up the other day, it hit home. I was actually able to visualize what had happened during those moments even though I was in my own bubble at the hospital just trying to stay strong and full of faith. She told me about how a group of people came together, stood in a circle, held hands and prayed for Lena at the moment that she was going into surgery to have the brain tumor removed. I thought I was going to just have to sit down and cry right there in front of the administration building. Why hadn't I understood before? Why didn't I have the full picture? I may not have known exactly what was happening but I'll tell you something. I felt it. I just knew when I was waiting, and waiting, and waiting, that there were waves of love being sent to my daughter. Then, and now, I have had the sense that we are in a bubble of love and strength. So many people have asked me how I stay so strong or mentioned that they aren't sure they would have that strength. The strength isn't coming from me. I'm just the one who is helping Lena and my other daughters see the love and strength. I am in a bubble of love from people I love, people I care about and people we have never met. I don't even begin to try to understand it but it is there.
Most of you know that although I have faith, my beliefs don't lay with one church or one religion. I believe in love, hope and the goodness that's in the world. I believe in God and believe in prayer but I equally believe that the way we act towards one another is a true sign of our religion and beliefs.
Back to my story... what was amazing about this conversation with Becky is this. I never told Lena. I told her how people cared about her and wanted her to get better. She knows that the people I work with put an amazing basket together for her. She heard and I think understood that. But I didn't tell her about the prayer circle. I don't know why. Maybe I didn't think she'd understand or maybe I was worried about how she'd react. For whatever reason, I didn't. Until after I talked with Becky. Friday, Lena and I had an appointment down in the Med Center. On the way down there, I told her. She had a look of complete 'wonder' on her face. Her first questions was, "For me?" Then she asked about what they said to God and did I see it. I had to explain that I was at the hospital with her so no, I wasn't there. She only asked a few more questions but they were all so heartfelt and I know that telling her about this incredible gift made her feel so loved and cherished. We had just left my work where everyone was so accepting and loving towards her so I'm sure she was picturing all of these people in her mind, holding hands and sending love to her. What a gift the prayers were but what a more precious gift because she now knows.
I have a friend to thank for bringing that back to me and allowing me to feel the act of love in a way I could then share with Lena. If you know Becky, you know that she's got one of the biggest hearts in the world. She opened it to me that day by showing me her 'wonder' at what my Alief family gave to me and mine.
Wednesday, August 12, 2009
My mother... and Hope.
A few weeks ago as this journey of ours began, I had a single thought going through my head, "I want my mommy." I wanted to call my mother, hop onto her lap and have her snuggle me close. It just seemed that things were happening, as they do in life, and this was one of those times when I was hoping my mom would give me strength, kiss my forehead and make it all better. But then I realized something, I'm the mother now. Although in my late 30's, I completely felt that I was a child, not ready to deal with the decisions and consequences that were about to unfold. For the first time, I realized that this was my responsibility. I couldn't run to my mom and have her make it all better. It was my turn to be strong for my daughter, my turn to kiss her tears away and my turn to carry the weight of those choices and consequences on my shoulders. For the first time, even though my daughters are now 6 years-old, I understood so much more of what my mother has sacrificed and given to me throughout my life. She has carried the burden, she has sheltered me and been strong when I'm sure there were so many moments where she would have preferred to huddle in a corner and cry. My mom lived through having her newborn daughter born with a club foot and watched her wheeled away at 3 days-old for just her first surgery. She lived through the torment of knowing that there wasn't a damn thing she could do about it except be strong and have hope. That was just the beginning of the journey for my mom. At this moment I can't remember one time when I needed her that she wasn't strong, loving and well- there for me. I think back now and wonder how many moments there were that I didn't see where she weeped for me, was scared for me or felt that the weight was too much to bear.
I love my mother, Beverly- my mommy. I have no doubt that it is because of her and my dad that I am sitting here typing and sharing rather than curled up in my bed weeping at this exact moment. My eyes are full of tears and I am ready to scream at the world, shut down and run away. This is a tough moment and what I am sure is just one of what has come before and one of the many that will continue to come in the future. And although I'm crying and still want my mom, I am getting through this because of who she is and what she has taught me. She has been the best example of a mom that a woman could ask for. She is smart, strong and most importantly, she has always been there. I want to be her when I grow up. :)
“Learn from yesterday, live for today, hope for tomorrow.”
Here's my quote for the day. Right now I very much dislike the idea of hope but know that without it, a full life is not possible. After Lena's surgery, I was ready to accept that she was no longer going to be able to use her left eye. The 3rd cranial nerve was severed and there was undeniably no chance of it being fixed, reattached, etc. The neurosurgeon made that very clear to us. So although she has vision in that eye, she cannot open her eyelid and now has lost most movement of her eye. Then... we started to hope. Just maybe she could have plastic surgery to partially open the eyelid. Just maybe she could learn to use her eyebrow to open the eye. Just maybe she had enough muscles left so that her left eye could somewhat follow her other eye. Just maybe she would have partial ability to use this eye if we found the right doctors and made the right decisions for Lena that would affect how she lived the rest of her life. Again, I had accepted that this eye would remain closed and was so grateful that the tumor didn't cause worse problems than this. I was thankful that my daughter was with me and that I could hold her, love her and tuck her into bed each night. But then there was hope.
We've had two doctor appointments in the last two days. One with our original neuro-opthalmologist (sp?), Dr. Edmonds from Texas Children's Hospital and then one this morning with Dr. Yen from Baylor College of Medicine Eye Clinic. It's frustrating when doctors advice and suggestions don't match but I think the bottom line is this... Lena is not a candidate to have her eyelid opened up. Also, Lena does not have enough mobility in that eye at the moment to be able to see even if we did. She would have extreme double vision. We can't open up her lid and leave it exposed. If we did the surgery, that eye would pretty much remain open and be completely unprotected. Think about how many times you blink when you think you're about to be poked in the eye, when an eyelash falls near or sand blows in it. She wouldn't have that ability. So, for the hope that has been built up in the last few weeks, it is now greatly weaned. It has been a hard day. There's no other way to say it. I love her so much and want so much to make this better. We are not without hope because we still have some options to look into but it's a struggle. Apparently we only have 3-5 weeks to do something before she begins to lose her vision in that eye. Her brain is going to start shutting it down. So I think tonight I'll just cry and crawl into my bed after the girls go to sleep and then tomorrow, we will all wake up with renewed energy and hope.
When I told Lena last night that we were again going to see a doctor and he was someone we haven't met before, she asked me if he was going to open her eye. I told her that he wouldn't be doing anything but looking at her eye today and talking to us about some ideas he might have for getting it to open a little bit. I'm not sure how much of the conversation she understood as we were in the doctor's office but the main thing I'm hoping tonight is that she doesn't ask me anything. I feel horrible that I can't directly face this with her but she is 6. I might have moments where I lose sight of my hope but I'm not willing to let her give up hers. As I said before, I won't lie to her and we've been honest with what all is happening but I'm still not ready to tell her that her eye will never be able to open. I'm not ready to take away her hope. I think that she needs it right now more than ever.
I know the updates are not as frequent but I will keep you posted when new news arrives or there's something that pulls at my heart strings. I'm back at work this week so we'll be busier than ever. For each of you that gives me a smile when I see you, thank you. It isn't easy to go into details about what all is happening when we stop to chat. It's hard enough to keep my composure as it is but I continue to feel that we are all wrapped in your kind words and thoughts.
Okay, I'm wiping away the tears. I'm going to go hug Kira, Lena and Naia and spend a few hours laughing and loving with them. Then it will be time to crawl into bed and let go.
Mom.... I love you more than you could possibly imagine. Thank you for always, always loving me, protecting me and giving me strength when I most needed it in life. I really do want to be like you when I grow up.
I love my mother, Beverly- my mommy. I have no doubt that it is because of her and my dad that I am sitting here typing and sharing rather than curled up in my bed weeping at this exact moment. My eyes are full of tears and I am ready to scream at the world, shut down and run away. This is a tough moment and what I am sure is just one of what has come before and one of the many that will continue to come in the future. And although I'm crying and still want my mom, I am getting through this because of who she is and what she has taught me. She has been the best example of a mom that a woman could ask for. She is smart, strong and most importantly, she has always been there. I want to be her when I grow up. :)
“Learn from yesterday, live for today, hope for tomorrow.”
Here's my quote for the day. Right now I very much dislike the idea of hope but know that without it, a full life is not possible. After Lena's surgery, I was ready to accept that she was no longer going to be able to use her left eye. The 3rd cranial nerve was severed and there was undeniably no chance of it being fixed, reattached, etc. The neurosurgeon made that very clear to us. So although she has vision in that eye, she cannot open her eyelid and now has lost most movement of her eye. Then... we started to hope. Just maybe she could have plastic surgery to partially open the eyelid. Just maybe she could learn to use her eyebrow to open the eye. Just maybe she had enough muscles left so that her left eye could somewhat follow her other eye. Just maybe she would have partial ability to use this eye if we found the right doctors and made the right decisions for Lena that would affect how she lived the rest of her life. Again, I had accepted that this eye would remain closed and was so grateful that the tumor didn't cause worse problems than this. I was thankful that my daughter was with me and that I could hold her, love her and tuck her into bed each night. But then there was hope.
We've had two doctor appointments in the last two days. One with our original neuro-opthalmologist (sp?), Dr. Edmonds from Texas Children's Hospital and then one this morning with Dr. Yen from Baylor College of Medicine Eye Clinic. It's frustrating when doctors advice and suggestions don't match but I think the bottom line is this... Lena is not a candidate to have her eyelid opened up. Also, Lena does not have enough mobility in that eye at the moment to be able to see even if we did. She would have extreme double vision. We can't open up her lid and leave it exposed. If we did the surgery, that eye would pretty much remain open and be completely unprotected. Think about how many times you blink when you think you're about to be poked in the eye, when an eyelash falls near or sand blows in it. She wouldn't have that ability. So, for the hope that has been built up in the last few weeks, it is now greatly weaned. It has been a hard day. There's no other way to say it. I love her so much and want so much to make this better. We are not without hope because we still have some options to look into but it's a struggle. Apparently we only have 3-5 weeks to do something before she begins to lose her vision in that eye. Her brain is going to start shutting it down. So I think tonight I'll just cry and crawl into my bed after the girls go to sleep and then tomorrow, we will all wake up with renewed energy and hope.
When I told Lena last night that we were again going to see a doctor and he was someone we haven't met before, she asked me if he was going to open her eye. I told her that he wouldn't be doing anything but looking at her eye today and talking to us about some ideas he might have for getting it to open a little bit. I'm not sure how much of the conversation she understood as we were in the doctor's office but the main thing I'm hoping tonight is that she doesn't ask me anything. I feel horrible that I can't directly face this with her but she is 6. I might have moments where I lose sight of my hope but I'm not willing to let her give up hers. As I said before, I won't lie to her and we've been honest with what all is happening but I'm still not ready to tell her that her eye will never be able to open. I'm not ready to take away her hope. I think that she needs it right now more than ever.
I know the updates are not as frequent but I will keep you posted when new news arrives or there's something that pulls at my heart strings. I'm back at work this week so we'll be busier than ever. For each of you that gives me a smile when I see you, thank you. It isn't easy to go into details about what all is happening when we stop to chat. It's hard enough to keep my composure as it is but I continue to feel that we are all wrapped in your kind words and thoughts.
Okay, I'm wiping away the tears. I'm going to go hug Kira, Lena and Naia and spend a few hours laughing and loving with them. Then it will be time to crawl into bed and let go.
Mom.... I love you more than you could possibly imagine. Thank you for always, always loving me, protecting me and giving me strength when I most needed it in life. I really do want to be like you when I grow up.
Tuesday, August 4, 2009
In My Daughter's Eyes- Martina McBride
In my daughter's eyes
I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes
In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me gives me strength when I am weak
I find reason to believe
In my daughter's eyes
And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all
hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes
In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy she made me
For I'll be there
In my daughter's eyes
Video: http://www.youtube.com/watch?v=eLS0Y40WwlA
I am a hero
I am strong and wise and I know no fear
But the truth is plain to see
She was sent to rescue me
I see who I wanna be
In my daughter's eyes
In my daughter's eyes everyone is equal
Darkness turns to light and the world is at peace
This miracle God gave to me gives me strength when I am weak
I find reason to believe
In my daughter's eyes
And when she wraps her hand around my finger
Oh it puts a smile in my heart
Everything becomes a little clearer
I realize what life is all
hangin' on when your heart has had enough
It's giving more when you feel like giving up
I've seen the light
It's in my daughter's eyes
In my daughter's eyes I can see the future
A reflection of who I am and what will be
Though she'll grow and someday leave
Maybe raise a family
When I'm gone I hope you see how happy she made me
For I'll be there
In my daughter's eyes
Video: http://www.youtube.com/watch?v=eLS0Y40WwlA
Monday, August 3, 2009
Family Trip to Louisiana
Every summer in late July or early August my family heads to Louisiana for a weekend away at Coushatta in Kinder. This includes my mom and stepdad, Beverly and Fred, my sister Alli and her family and my two stepbrothers and their family. I think the first time my mom planned this family adventure was when the girls were about to turn two or maybe it was the summer before they were three. All I remember was that it wasn't all that relaxing trying to keep track of triplets in an open environment like that. We are ALL about containment and control when it comes to new situations. We know now and have for a while that they outnumber us and anything can happen! While in LA, we stay in the chalets at Red Shoes RV Resorts & Chalets and reserve five chalets side-by-side so that we all have our own space but can meandor back and forth between chalets to visit or find the snacks, cold beer or margaritas. :)
This year we were pretty sure we wouldn't be attending with the rest of the family. My mom suggested that they not go at all since we might not attend but that didn't sit all too well with me. I didn't want them all at home thinking about the trip they were missing since there wasn't anything that could be done and I know my mom really enjoys this weekend away. However, I didn't call to confirm our reservation or plan anything in advance. My family knew that chances were we wouldn't be able to go and that Lena would be recovering. My sister offered to take Kira and Naia with her family but that seemed like such a tough decision to make since Lena was already missing out on so much. I wasn't sure I could bear to see the disappointment in her eyes as her sisters talked about the trip that she wasn't a part of. I mean, one-on-one time is hard to come by in this family and appreciated by Kira, Lena and Naia but I don't even think a weekend full of mom and dad's attention would make up for missing this trip that the girls were highly anticipating.
As you know, Lena had brain surgery on July 20th and was released from the hospital on July 25th barely eating and not walking all too well. Miraculously by early the next week, Lena seemed in great spirits and was eating, walking and playing almost as if the surgery had never happened. So... we decided to go. The rest of the family headed down on Wednesday night or early Thursday but we didn't leave until Friday morning. Britt had already missed so many days of work while at the doctor appointments and hospital that we didn't want to use anymore.
Last year I hit a jackpot during this family weekend away. I hit a line of Pharoah's on a quarter slot machine and thought it was amazing. $12,500. Yep, that's quite a haul. Britt and I smiled from ear to ear all the way home. This year, we smiled 24/7 because we were able to attend at all. The girls got up early each day, stayed up late each night, swam all day, played with their cousins and had a wonderful time. There were a multitude of changes from that first trip to this one. Although still nervous about all those things moms and dads get nervous about, the girls were fairly independent and entertained. This gave us a chance to sit back, relax and have a few cold beers ourselves.
It was such a wonderful weekend. We didn't come back with money in our pockets but we came back with three happily exhausted, well fed, swimmed out almost 6 year-old daughters. :) This was our first adventure back together as a family and turned out to be more than we could have expected. Our "new normal" has begun...
Next up... How did anal retentive Holland deal with the fact that she did not have the girls' birthday party that would take place in August entirely planned by the end of June??? I'll let you know about my complete breakdown and recovery soon. :)
This year we were pretty sure we wouldn't be attending with the rest of the family. My mom suggested that they not go at all since we might not attend but that didn't sit all too well with me. I didn't want them all at home thinking about the trip they were missing since there wasn't anything that could be done and I know my mom really enjoys this weekend away. However, I didn't call to confirm our reservation or plan anything in advance. My family knew that chances were we wouldn't be able to go and that Lena would be recovering. My sister offered to take Kira and Naia with her family but that seemed like such a tough decision to make since Lena was already missing out on so much. I wasn't sure I could bear to see the disappointment in her eyes as her sisters talked about the trip that she wasn't a part of. I mean, one-on-one time is hard to come by in this family and appreciated by Kira, Lena and Naia but I don't even think a weekend full of mom and dad's attention would make up for missing this trip that the girls were highly anticipating.
As you know, Lena had brain surgery on July 20th and was released from the hospital on July 25th barely eating and not walking all too well. Miraculously by early the next week, Lena seemed in great spirits and was eating, walking and playing almost as if the surgery had never happened. So... we decided to go. The rest of the family headed down on Wednesday night or early Thursday but we didn't leave until Friday morning. Britt had already missed so many days of work while at the doctor appointments and hospital that we didn't want to use anymore.
Last year I hit a jackpot during this family weekend away. I hit a line of Pharoah's on a quarter slot machine and thought it was amazing. $12,500. Yep, that's quite a haul. Britt and I smiled from ear to ear all the way home. This year, we smiled 24/7 because we were able to attend at all. The girls got up early each day, stayed up late each night, swam all day, played with their cousins and had a wonderful time. There were a multitude of changes from that first trip to this one. Although still nervous about all those things moms and dads get nervous about, the girls were fairly independent and entertained. This gave us a chance to sit back, relax and have a few cold beers ourselves.
It was such a wonderful weekend. We didn't come back with money in our pockets but we came back with three happily exhausted, well fed, swimmed out almost 6 year-old daughters. :) This was our first adventure back together as a family and turned out to be more than we could have expected. Our "new normal" has begun...
Next up... How did anal retentive Holland deal with the fact that she did not have the girls' birthday party that would take place in August entirely planned by the end of June??? I'll let you know about my complete breakdown and recovery soon. :)
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