Most of us know the old adage "time heals all wounds". What amount of time does this mean when your child dies? This sage expression does not apply to me. Today is harder than yesterday. This second year without Bea is so much harder than last year.
The reality of losing Bea is just really starting to take hold. It's HARDER not to see her today than it was the day after she died. Because it's been so very long. The more time that passes the more I want to see her. It's a visceral need. I want to tickle her foot. I want to give her a hug. I want to hear her for real, not in a recording. But I can't.
For the last 18 months I've been able bear down and push past the gloomy moments. I'd have a good cry and feel better but never had a really sad day. Now I'm having sad days, even sad weeks. The grief that was so close to the surface has dug in deeper and sticks around. Recognizing that my grief is now becoming depression is very difficult. I don't want to admit it because I don't want to think that anything about Bea, even her death, could cause me any kind of pain. She was too wonderful and there's no way that she could ever hurt me.
Even with all of this sadness I am living a fairly happy life. I have a job I love, indulge in hobbies, hang out with friends, play with my son and his friends and do all the regular stuff a mom and wife does. So, how do I do it? How do I go to sleep feeling peaceful almost every night? How do I get up every morning and look forward to the day? Because the grief and sadness are still bearable. I look to the future with positivity and don't worry that I'll be sad again. Because I will. I'll have a moment of deep grief and cry for however long I need. Then I'll start thinking of the great life I gave my daughter and I'll cry again. But I'll get through that moment. This grief is simply evidence of real love.
Wednesday, July 9, 2014
Thursday, January 9, 2014
Zofran and Constipation
I don't often come across anything medically useful these days but when I do I will share what I find.
What I have to share is about Zofran. If you have a child on steroids it's possible that they are on Zofran to take away an nausea that may result from the steroids. Nausea is a common side effect but common doesn't mean that everybody gets it.
Beatrice did not but her oncologist assured me that Zofran was pretty harmless and it couldn't hurt to keep her on it just in case. Bea was on steroids for a long period at the end of the summer 2012 all the way through her last hospitalization in mid-November. During this time she had severe constipation. It was the only thing that made her cry for long periods of time. Seriously. During an entire year of surgeries, shots, hospital stays and headaches.
I asked her doctor if it could be the cancer and they seemed to think it was possible but didn't know for sure. So, I put her on a child's stool softener and laxative and within a day she was better. And I kept her on them.
I was in the ER with pneumonia last month and the doctor put me on Zofran for mild nausea. It was a familiar medicine so I didn't think anything of it. I became horribly constipated and took a laxative after 4 days of no pooping. It did the trick.
I Googled "Zofran" and found out that it can cause constipation, even though the label does not warn regarding. It's a common complaint among pregnant women who have morning sickness. They're prescribed Zofran and stop feeling nauseous and throwing up but then they can't poop.
It took a good week for the Zofran to get totally out of my system. I'm not saying that it's a bad medicine. If your child is throwing up or nauseous from steroids or chemo or any other medicine they need Zofran will make them feel better. But, if you give them Zofran keep track of their pooping. You might need to give them a laxative while they're taking that medicine.
What I have to share is about Zofran. If you have a child on steroids it's possible that they are on Zofran to take away an nausea that may result from the steroids. Nausea is a common side effect but common doesn't mean that everybody gets it.
Beatrice did not but her oncologist assured me that Zofran was pretty harmless and it couldn't hurt to keep her on it just in case. Bea was on steroids for a long period at the end of the summer 2012 all the way through her last hospitalization in mid-November. During this time she had severe constipation. It was the only thing that made her cry for long periods of time. Seriously. During an entire year of surgeries, shots, hospital stays and headaches.
I asked her doctor if it could be the cancer and they seemed to think it was possible but didn't know for sure. So, I put her on a child's stool softener and laxative and within a day she was better. And I kept her on them.
I was in the ER with pneumonia last month and the doctor put me on Zofran for mild nausea. It was a familiar medicine so I didn't think anything of it. I became horribly constipated and took a laxative after 4 days of no pooping. It did the trick.
I Googled "Zofran" and found out that it can cause constipation, even though the label does not warn regarding. It's a common complaint among pregnant women who have morning sickness. They're prescribed Zofran and stop feeling nauseous and throwing up but then they can't poop.
It took a good week for the Zofran to get totally out of my system. I'm not saying that it's a bad medicine. If your child is throwing up or nauseous from steroids or chemo or any other medicine they need Zofran will make them feel better. But, if you give them Zofran keep track of their pooping. You might need to give them a laxative while they're taking that medicine.
Tuesday, November 19, 2013
Quiet
I haven't felt particularly inspired to write about my life this fall. I've just very much needed the quiet.
Taking care of Bea and becoming a public figure of some sort was very much outside of my comfort zone. I am actually not an extrovert but had to put on that hat to provide her with the entertainment and company that she wanted and needed during the 12 months of her illness. Bea was a little shy but got a lot of energy from the buzz around her. This need fueled me to provide that for her and so I made sure she had it.
It's amazing what you can do and be given the right motivation. You can become someone you never knew you could be. Your natural inclinations are turned on their head and your life becomes virtually unrecognizable.
In many ways I lost myself in Bea's illness. It's the only time in my life when I found not being myself was OK. But with her death came not only grief but finding out who I am without her. I like who I am but I don't like being without her. And that's an essential part of who I am now and there's no choice about it. Part of accepting her death has been to accept who I am now.
And what I am is a quiet person who prefers the company of just one or a few friends, who is uncomfortable at parties and who prefers spending my day doing creating things by myself or hanging out with my family.
It's a pretty simple life but it's the one that I've made. And I like it.
Taking care of Bea and becoming a public figure of some sort was very much outside of my comfort zone. I am actually not an extrovert but had to put on that hat to provide her with the entertainment and company that she wanted and needed during the 12 months of her illness. Bea was a little shy but got a lot of energy from the buzz around her. This need fueled me to provide that for her and so I made sure she had it.
It's amazing what you can do and be given the right motivation. You can become someone you never knew you could be. Your natural inclinations are turned on their head and your life becomes virtually unrecognizable.
In many ways I lost myself in Bea's illness. It's the only time in my life when I found not being myself was OK. But with her death came not only grief but finding out who I am without her. I like who I am but I don't like being without her. And that's an essential part of who I am now and there's no choice about it. Part of accepting her death has been to accept who I am now.
And what I am is a quiet person who prefers the company of just one or a few friends, who is uncomfortable at parties and who prefers spending my day doing creating things by myself or hanging out with my family.
It's a pretty simple life but it's the one that I've made. And I like it.
Sunday, September 29, 2013
Just About Over
The month that I dreaded is just about over.
Bea's 8th birthday was this past Thursday. I took Lewis out of school and Chris took the day off. The plan was to go to the Atlanta Botanic Gardens but we just couldn't get moving. So we ended up going out to lunch and the park. Then we went home and spent some time in our back yard. Chris tended to the garden.
I know that a lot of friends read my blog to see what's really going on because in person I don't get really emotional. It makes me uncomfortable and that discomfort overrides any grief that I'm feeling. So I get upset and cry on my own, which is how I prefer it.
This month has been especially hard and it's made me a real pain in the ass some days. I'm cranky and pretty whiny when I talk to friends. It's a little hard to be positive some days. I don't ever spend a day sulking or sleeping or anything like that. But, the sunny side of things that usually presents itself isn't.
So I continue to do the things that I like to do and don't avoid anything that's difficult. The reason is that even when I'm down I am optimistic about my future. I hope that one day I'll be able to look at a photo album of Bea and feel happy. Maybe not blissfully happy but that'd be just fine.
Bea's 8th birthday was this past Thursday. I took Lewis out of school and Chris took the day off. The plan was to go to the Atlanta Botanic Gardens but we just couldn't get moving. So we ended up going out to lunch and the park. Then we went home and spent some time in our back yard. Chris tended to the garden.
I know that a lot of friends read my blog to see what's really going on because in person I don't get really emotional. It makes me uncomfortable and that discomfort overrides any grief that I'm feeling. So I get upset and cry on my own, which is how I prefer it.
This month has been especially hard and it's made me a real pain in the ass some days. I'm cranky and pretty whiny when I talk to friends. It's a little hard to be positive some days. I don't ever spend a day sulking or sleeping or anything like that. But, the sunny side of things that usually presents itself isn't.
So I continue to do the things that I like to do and don't avoid anything that's difficult. The reason is that even when I'm down I am optimistic about my future. I hope that one day I'll be able to look at a photo album of Bea and feel happy. Maybe not blissfully happy but that'd be just fine.
Monday, September 9, 2013
The Little Man
I call Lewis "Little Man". It's a term of endearment and I never address him with those words when he's in trouble. I want him to know that those are good words and not a nickname to fear.
Lewis started Kindergarten a month ago and is loving it. During the first week of school he started asking a lot about Beatrice again. He asked where she was and I told him that I didn't know for sure but that if heaven does exist that's where she certainly is. For her sake I hope it does because she deserves to be there and for my sake I'd like to think that there's a place we can meet again. But, I just don't know. I can only hope.
Lewis wanted to see where heaven is on a map and asked the question several different ways to try and get an answer he understood. The idea of a place that isn't part of our physical space was too abstract for him to grasp. To him heaven is akin to the North Pole. It's a place in the world that you just can't get to but it's on our planet.
Anyway, Lewis is a great kid and does what kids his age do. He's really curious and wants to play all the time. He's reading now and I frequently find him passed out in his bed on top of a book. He likes rules when they're written down and consistent. When they're not he will be quick to question their legitimacy.
I do as much as I can to keep him from being lonely. His favorite cartoons are not age appropriate - a little young - but they're all about a brother and sister so I just can't encourage him to watch something else. I feel that he needs their stories and understands the bond of the sibling characters. It's a place just needs to go sometimes.
He is still very attached to his Mickey Mouse and takes him almost everywhere. When the doll gets dirty he asks me to wash him. He sometimes takes on a Mickey persona but that's usually an excuse to do Lewis' dirty work. If something falls over or there's a mess to clean up I find that it's often Mickey's fault. Funny how he doesn't recognize that when Bea was alive it was usually Lewis who made the messes.
Lewis is young and has adjusted well to his new normal. That's what happens when you're that young. Every day is an adaptation and shapes who you will be. Thankfully, it seems that Lewis is on his way and will soon be his own person, not just my little man.
Lewis started Kindergarten a month ago and is loving it. During the first week of school he started asking a lot about Beatrice again. He asked where she was and I told him that I didn't know for sure but that if heaven does exist that's where she certainly is. For her sake I hope it does because she deserves to be there and for my sake I'd like to think that there's a place we can meet again. But, I just don't know. I can only hope.
Lewis wanted to see where heaven is on a map and asked the question several different ways to try and get an answer he understood. The idea of a place that isn't part of our physical space was too abstract for him to grasp. To him heaven is akin to the North Pole. It's a place in the world that you just can't get to but it's on our planet.
Anyway, Lewis is a great kid and does what kids his age do. He's really curious and wants to play all the time. He's reading now and I frequently find him passed out in his bed on top of a book. He likes rules when they're written down and consistent. When they're not he will be quick to question their legitimacy.
I do as much as I can to keep him from being lonely. His favorite cartoons are not age appropriate - a little young - but they're all about a brother and sister so I just can't encourage him to watch something else. I feel that he needs their stories and understands the bond of the sibling characters. It's a place just needs to go sometimes.
He is still very attached to his Mickey Mouse and takes him almost everywhere. When the doll gets dirty he asks me to wash him. He sometimes takes on a Mickey persona but that's usually an excuse to do Lewis' dirty work. If something falls over or there's a mess to clean up I find that it's often Mickey's fault. Funny how he doesn't recognize that when Bea was alive it was usually Lewis who made the messes.
Lewis is young and has adjusted well to his new normal. That's what happens when you're that young. Every day is an adaptation and shapes who you will be. Thankfully, it seems that Lewis is on his way and will soon be his own person, not just my little man.
Sunday, August 25, 2013
Perfection
In life I think we all strive for some kind of perfection. The perfection that we seek is usually not that complicated. The perfect slice of pie. The perfect sunset. The perfect smile when you make a friend laugh. A great pair of shoes.
I had the perfect family. A great husband and "one of each" - a smart, amazing daughter and adorable, bubbly son. Two years apart and the best of friends. They were good kids and life was fabulous. Anything I had to complain about was usually pretty petty stuff.
With Bea's passing suddenly my life was imperfect. Eight months later I am just starting to figure out this new imperfect life. Chris is still great and Lewis is still adorable and bubbly. But I still need my smart and amazing Beatrice. Lewis still needs his sister and Chris still needs his Boo. That need for her makes even wonderful days less than perfect. It doesn't make those days necessarily sad but it leaves me with the feeling that something was supposed to happen and didn't.
If you have a sick child, especially a child who is terminally ill, make sure that you enjoy every second with him or her that you can. Enjoy that perfect time you have with them. Because even when Bea was at her most ill I felt that life was still perfect. Stressful and sometimes painful but perfect. It was so much better to have her than to not.
I had the perfect family. A great husband and "one of each" - a smart, amazing daughter and adorable, bubbly son. Two years apart and the best of friends. They were good kids and life was fabulous. Anything I had to complain about was usually pretty petty stuff.
With Bea's passing suddenly my life was imperfect. Eight months later I am just starting to figure out this new imperfect life. Chris is still great and Lewis is still adorable and bubbly. But I still need my smart and amazing Beatrice. Lewis still needs his sister and Chris still needs his Boo. That need for her makes even wonderful days less than perfect. It doesn't make those days necessarily sad but it leaves me with the feeling that something was supposed to happen and didn't.
If you have a sick child, especially a child who is terminally ill, make sure that you enjoy every second with him or her that you can. Enjoy that perfect time you have with them. Because even when Bea was at her most ill I felt that life was still perfect. Stressful and sometimes painful but perfect. It was so much better to have her than to not.
Saturday, July 27, 2013
A Little of Everything
Acceptance. Denial. Grief. Fantasy. Refusal. Disappointment. Disbelief. Dreams. Sadness. Confusion. Artifice....
.... A new life. Losing a child, even when you know it's going to happen, creates a life that you don't always understand and don't want to. You experience emotions that you see second hand on TV but never thought you'd go through.
I spent a year caring for Bea through her illness. The postings from those days were mostly cheery and positive, which is just how I am. They don't mean that I wasn't scared or sad or exhausted. Bea's life for the 12 months that she battled cancer was filled with an immense amount of activity. She was in the hospital for 4 weeks and then had radiation 4-5 days per week for another month at 7am. She had physical therapy a few times a week, saw her doctor at least once a month and travelled to Pittsburg for the trial she was in every 3 weeks. She finished kindergarden, took hip hop dance lessons, went to summer camp and took piano lessons. She became a selling artist and had an art show in the fall (during our neighborhood garage sale but still it was cool). She had loads of play dates. Her little bro was in the mix for most of these activities.
When her health started to decline I did everything I could to take the attention off of this and give her amazingly fun things to do. During the fall we went bowling every Sunday afternoon. Even when she couldn't walk she could still push the ball down the little slide the alley has for children. And she liked the snacks.
But she did decline and it all seemed to happen so fast that I didn't have time to process it. Or maybe I didn't want to. Because there was nothing I could do to fix it. I could only take care of her and that just doesn't seem like enough. I owed her more. More time. More love. More life.
I don't feel guilty that I couldn't find a cure but I feel just so damn sad that this disease even exists. I don't want any family to go through what we did. I don't want any more children to give up their future because some cells in their brain decided to do their own thing.
I'm not ready yet but when I am finding a cure for pediatric brain cancer will be a big focus in my life. I don't know how I'll do it but it's coming.
.... A new life. Losing a child, even when you know it's going to happen, creates a life that you don't always understand and don't want to. You experience emotions that you see second hand on TV but never thought you'd go through.
I spent a year caring for Bea through her illness. The postings from those days were mostly cheery and positive, which is just how I am. They don't mean that I wasn't scared or sad or exhausted. Bea's life for the 12 months that she battled cancer was filled with an immense amount of activity. She was in the hospital for 4 weeks and then had radiation 4-5 days per week for another month at 7am. She had physical therapy a few times a week, saw her doctor at least once a month and travelled to Pittsburg for the trial she was in every 3 weeks. She finished kindergarden, took hip hop dance lessons, went to summer camp and took piano lessons. She became a selling artist and had an art show in the fall (during our neighborhood garage sale but still it was cool). She had loads of play dates. Her little bro was in the mix for most of these activities.
When her health started to decline I did everything I could to take the attention off of this and give her amazingly fun things to do. During the fall we went bowling every Sunday afternoon. Even when she couldn't walk she could still push the ball down the little slide the alley has for children. And she liked the snacks.
But she did decline and it all seemed to happen so fast that I didn't have time to process it. Or maybe I didn't want to. Because there was nothing I could do to fix it. I could only take care of her and that just doesn't seem like enough. I owed her more. More time. More love. More life.
I don't feel guilty that I couldn't find a cure but I feel just so damn sad that this disease even exists. I don't want any family to go through what we did. I don't want any more children to give up their future because some cells in their brain decided to do their own thing.
I'm not ready yet but when I am finding a cure for pediatric brain cancer will be a big focus in my life. I don't know how I'll do it but it's coming.
Subscribe to:
Posts (Atom)