Sadness is something that I have avoided for years. I was determined to keep sadness away because I did not want to slide down that slippery slope that would leave me depressed. Sadness and anger went 'hand-in-hand' for me. For my sad days, I had a list of strategies to help me through, so that I wouldn't feel hopeless. Things such as quiet time with God, encouraging music, walks outside, healthy food, extra water, scripture and prayer time would be on my list. Unfortunately, I found these strategies rather unappealing when I woke up with the burdensome feeling of sadness. I often ditched the list in favor of shopping, eating out, coffee breaks or a book, which never helped and often left me feeling worse (wasted time really bothers me). Over time, I learned from my experience and more often chose the 'good' strategies to help me get through the sad days. What I remember most was a strong determination to 'get over' the sadness and not let it 'win'.
I acknowledged my sadness as being related to my girls' delining health and the increasing work load, but I didn't like this fact. My girls' were special, a source of blessing and worth cherishing. I did not want to see them as a source of sadness, and I certainly didn't want anyone else to have that view. So, sadness became the enemy that I fought against.
Now, it is different. I am allowed to be sad. What a strange thing.
With the passing of Ashley and Hope, I somehow have permission to be sad without diminishing the value of my special girls. So, this is new for me, and I'm trying to figure it out. The sadness that I am feeling is a light, generalized feeling that kind of floats up and down around me in varying degrees of intensity. It doesn't stop me from moving through my day, or loving my children or accomplishing the tasks that are set before me. It's just a subtle awareness of my altered life which leaves me feeling fragile and tender.
When I acknowledge this sadness, I move a little slower and find myself gently reminded to give thanks for the blessings around me. This is how I know that God is at work and I am not alone. When I don't acknowledge it, I fall into the familiar cycle of fighting the sadness.
This sadness is not scary for some reason, and it makes sense. To name what I'm feeling is a really good starting point. To trust God to walk me through that feeling, brings me to acceptance which is quickly followed by peace.
What a remarkable thing! So simple and yet I would not have been open to learning this lesson earlier. I was just so focused on getting through each day. I can't help but think that I (and my family) would have benefited from my learning this lesson sooner, but I'll accept the lesson now and endeavor to put it to good use.
Sunday, February 26, 2012
Friday, February 17, 2012
Sunday, February 12, 2012
Remembering Ashley
During Ashley's first hospital admission, when she was two months old, she had her first smiles...
We had all the tests done at that time. CT scans, EEG's, MRI, lumbar punctures and a lot of blood work. They could only tell us that she had Infantile Spasms (a certain type of seizures), but they could not tell us why.
With the help of an extremely diligent genetics doctor, we found out that Ashley's seizures were caused by ASLD. Ashley was four months old at the time, and it was her second hospital admission. I remember feeling a certain relief that we had an answer, and at the same time feeling stunned at the finality of the diagnosis. This disorder was very rare, and the research was minimal, with the most severe cases (Ashley being part of that group) usually ending in death at 4-6 months of age. The information available showed the ineffectiveness of seizure meds, and that seizures were never controlled.
The infantile spasms were a type of seizure that would occur in clusters, generally as the person was falling asleep or waking up. I remember spending hours at night trying to get Ashley asleep, and just as I would lay her down, another 45minute round of seizures would start up, and she would cry in between each seizure. One particular night, I verbalized my anxiety and frustration with angry words relaying how I would love to throw my water glass through the mirror, that I just needed to hear the sound of glass breaking on glass. I will never forget how Alex, in the middle of another sleepless night, leaned over, put his hand on my shoulder and said, "It's okay to be angry".
Those words were a gift, directly from God, and I praise God for helping Alex to love me in that moment when I wasn't very lovable. That's just one example of how the many prayers have helped us.
This is Ashley at four months old. She was still having multiple seizures and was very limp with absolutely no head control. This was about the time that my cousin, Elise, came to stay with us. She was a wonderful blessing. Respite didn't become available till Ashley was 6 months old. Elise's help was a blessing, and she gave up a summer job to come stay with us.
Ashley had a really good month when she was 5 months old. She smiled a LOT. Usually smiling at the ceiling, we often wondered if there were Angels dancing up there for her.
As the seizures got worse, the smiles decreased, and by six months old, Ashley was seizing for 2-3 days at a time. She couldn't sleep, and she lost the ability to suck. I remember spending hours trying to get her to take a bottle. Eventually we started using a feeding tube, and it wasn't expected that she would live very long.
For the next six months, we waited and watched. We had many moments, where it looked like 'this would be it', but Ashley pushed through. We did not admit Ashley to hospital for this, as we found it was important to stay home. Staying home, we focused on Ashley's comfort and on a peaceful home environment for all of us. We were set up with a nurse who would come to give us 'respite' so that we could have a 'break'. I remember thinking that it was a ridiculous idea that someone should think I need a 'break' from my baby. But I was counselled that I should accept the help now because if I didn't, then I wouldn't get any help later. And yes, I did need help later, but I always struggled with accepting someone in my home, looking after my children.
When I think of Ashley's first year, I remember the seizures and the unexpected smiles that would come and go. She would go for weeks without smiling, and then surprise us with a good day, and brighten our day with a smile. Almost as if she knew we needed it. I remember how peaceful she seemed, even with all the seizures. We could hold her for hours, and sometimes she would be vibrating with seizures, but still there would be a calmness. I remember cherishing that fifth month because of her smiles and the small number of seizures. I remember crying when the smiles went away. I remember the constant decision making in regards to medication, and how everyone seemed to think I should be the one to make the decisions. I remember teaching Alex how to insert the NG tube because I had to go back to work. I remember amazing friends, family and aquaintances that brought meals, or picked up groceries for us.
I remember God's hands working through many human hands. Don't ever think that your prayers aren't heard.
I remember a friend coming to take beautiful photo's of us with our dying baby, so that we would always have something special and beautiful to remember.
I love remembering all the blessings in the midst of the suffering. Sharing the journey, helps me remember and smile at the highlights of God's love shining through.
We had all the tests done at that time. CT scans, EEG's, MRI, lumbar punctures and a lot of blood work. They could only tell us that she had Infantile Spasms (a certain type of seizures), but they could not tell us why.
With the help of an extremely diligent genetics doctor, we found out that Ashley's seizures were caused by ASLD. Ashley was four months old at the time, and it was her second hospital admission. I remember feeling a certain relief that we had an answer, and at the same time feeling stunned at the finality of the diagnosis. This disorder was very rare, and the research was minimal, with the most severe cases (Ashley being part of that group) usually ending in death at 4-6 months of age. The information available showed the ineffectiveness of seizure meds, and that seizures were never controlled.
The infantile spasms were a type of seizure that would occur in clusters, generally as the person was falling asleep or waking up. I remember spending hours at night trying to get Ashley asleep, and just as I would lay her down, another 45minute round of seizures would start up, and she would cry in between each seizure. One particular night, I verbalized my anxiety and frustration with angry words relaying how I would love to throw my water glass through the mirror, that I just needed to hear the sound of glass breaking on glass. I will never forget how Alex, in the middle of another sleepless night, leaned over, put his hand on my shoulder and said, "It's okay to be angry".
Those words were a gift, directly from God, and I praise God for helping Alex to love me in that moment when I wasn't very lovable. That's just one example of how the many prayers have helped us.
This is Ashley at four months old. She was still having multiple seizures and was very limp with absolutely no head control. This was about the time that my cousin, Elise, came to stay with us. She was a wonderful blessing. Respite didn't become available till Ashley was 6 months old. Elise's help was a blessing, and she gave up a summer job to come stay with us.
Ashley had a really good month when she was 5 months old. She smiled a LOT. Usually smiling at the ceiling, we often wondered if there were Angels dancing up there for her.
For the next six months, we waited and watched. We had many moments, where it looked like 'this would be it', but Ashley pushed through. We did not admit Ashley to hospital for this, as we found it was important to stay home. Staying home, we focused on Ashley's comfort and on a peaceful home environment for all of us. We were set up with a nurse who would come to give us 'respite' so that we could have a 'break'. I remember thinking that it was a ridiculous idea that someone should think I need a 'break' from my baby. But I was counselled that I should accept the help now because if I didn't, then I wouldn't get any help later. And yes, I did need help later, but I always struggled with accepting someone in my home, looking after my children.
When I think of Ashley's first year, I remember the seizures and the unexpected smiles that would come and go. She would go for weeks without smiling, and then surprise us with a good day, and brighten our day with a smile. Almost as if she knew we needed it. I remember how peaceful she seemed, even with all the seizures. We could hold her for hours, and sometimes she would be vibrating with seizures, but still there would be a calmness. I remember cherishing that fifth month because of her smiles and the small number of seizures. I remember crying when the smiles went away. I remember the constant decision making in regards to medication, and how everyone seemed to think I should be the one to make the decisions. I remember teaching Alex how to insert the NG tube because I had to go back to work. I remember amazing friends, family and aquaintances that brought meals, or picked up groceries for us.
I remember God's hands working through many human hands. Don't ever think that your prayers aren't heard.
I remember a friend coming to take beautiful photo's of us with our dying baby, so that we would always have something special and beautiful to remember.
I love remembering all the blessings in the midst of the suffering. Sharing the journey, helps me remember and smile at the highlights of God's love shining through.
Tuesday, January 24, 2012
Clothes
Dressing Mira in Ashley and Hope's clothes always gets me remembering. Mira wore this cute little green outfit on Sunday, and I remember how much I loved that outfit when Ashley first got it.
Mira has a little cold, so I couldn't get her to take the thumb out of her mouth, but you can see her anyway...
After Ashley started having seizures at 2 months old, we spent some time in the hospital trying to get them under control, but eventually went home with seizures that would cycle in clusters lasting up to an hour. The MRI had shown that her brain was too small, 'not enough white matter and not enough grey matter'. I remember sitting there in a stunned silence as they tried to explain to us what the MRI picture meant. I clearly recall thinking, "...just tell me if she's going to live or die.".
Leaving the hospital after that admission, we brought home our baby and left behind our hopes and dreams.
Ashley's seizures fluctuated constantly. In the summer or 2006, when she was wearing the green outfit that I was talking about, she was still having a LOT of seizures and a lot of discomfort. I went looking for pics of Ashley in that outfit and here's what I found...
Brodie was such a good sport with the picture taking. My cousin, Katie, took these photos for me. We kept pausing while Ashley would have a seizure, and then we would try again for another picture (we have about 12 more of these). I was trying so hard for a smile from Ashley. Now I am just so glad to have these photos, even with no smiles, because it shows Ashley just as she was. Ooooh, I could just squeeze her, she was so cute!
Mira has a little cold, so I couldn't get her to take the thumb out of her mouth, but you can see her anyway...
After Ashley started having seizures at 2 months old, we spent some time in the hospital trying to get them under control, but eventually went home with seizures that would cycle in clusters lasting up to an hour. The MRI had shown that her brain was too small, 'not enough white matter and not enough grey matter'. I remember sitting there in a stunned silence as they tried to explain to us what the MRI picture meant. I clearly recall thinking, "...just tell me if she's going to live or die.".
Leaving the hospital after that admission, we brought home our baby and left behind our hopes and dreams.
Ashley's seizures fluctuated constantly. In the summer or 2006, when she was wearing the green outfit that I was talking about, she was still having a LOT of seizures and a lot of discomfort. I went looking for pics of Ashley in that outfit and here's what I found...
Brodie was such a good sport with the picture taking. My cousin, Katie, took these photos for me. We kept pausing while Ashley would have a seizure, and then we would try again for another picture (we have about 12 more of these). I was trying so hard for a smile from Ashley. Now I am just so glad to have these photos, even with no smiles, because it shows Ashley just as she was. Ooooh, I could just squeeze her, she was so cute!
Saturday, January 14, 2012
Dear Ashley,
Your birthday is coming soon, and I seem to have realized that we have to celebrate it without you. I cry for so many reasons these days, but today as I try to get the energy to bring out your baby book, I am shedding more tears of remembering. It would be nice to finish your baby book, and have it to reflect on when we visit your grave. Just thinking about your baby book, brings on the reflections.
I remember the day you were born. After hours of labour, you suddenly came so fast that you had a moment where you stopped breathing and your heart rate dropped. I remember hearing the nurse call a code, and of course, I knew exactly what that meant. We prayed for you immediately. Within moments of your arrival, you were already lifted up in prayer. You rallied quickly and when we went home with you, we had already forgotten the minor blip.
I remember the first couple weeks, as you struggled to latch when I nursed you. I thought you were teaching me patience! I could not pull your head toward me, because you would arch away from me if I touched the back of your head. Instead, I would position you on the nursing pillow and lean in, waiting quietly until you were able to start sucking on your own.
Those first two months of loving you without the knowledge of your disability, was a blessing. I always had uncertainties, but also felt that I was hormonal and paranoid. So, I quickly put aside any feelings of dread.
When you were two weeks old, we saw your pediatrician for a regular appointment. I remember when he asked me if I had any concerns. I spoke an immediate, 'Yes', and then followed it by shrugging and stating that I had nothing concrete to base my concerns on. I told him of the eye flicking and of your back arching away from me when I tried to feed you. We decided that babies do all sorts of strange things in the beginning, and we would keep an eye out for anything else.
I remember trying to position you for a "One Month Photo" and commenting on your incredibly floppy head. I look at the photo and see your head drifting down to the side, and remember how long I tried to get your head into a nice position, and how baffled I was that you had absolutely no head control. You were a limp noodle for the first year of your life. Of course, it all became clear when the more obvious seizures brought us in to emerg for the first time.
That happened right after Easter, when you were two months old, Ashley. That was the beginning of a new normal for us, and I hardly even remember that first two months of blissful ignorance. But I do know that the blessing of knowing you without labels gave me something I needed when they told me that you would be severely handicapped. The word, 'handicapped', scared me and I didn't know how to deal with that. Then I looked at you, Ashley, my beautiful baby that I already loved and accepted just as you were, and I knew that no 'word' could make me stop loving you.
I remember sitting in the hospital room, staring at you in my arms and repeating, "I love you right now and always." All the negative power held in the word 'handicapped' was eliminated when I focused on loving you in the present. I love you still, Ashley.
Love,
Mommy
Where does that leave me now? I don't have her to hold anymore. What do I do with my tears and my longing?
Although I do this imperfectly, I will try to follow what faith has taught me in the last years. I will offer up all my suffering and love to Jesus. He knows me and understands me perfectly. I can cry out all my hurt to Him, as often as I want, and he will never grow bored or irritated. His merciful heart soothes my soul and eventually brings me back to the present, fully nourished and ready to love others with the power of His love. If suffering leads me to love, then I must accept it gratefully. But I am no saint, it is only by prayer and the power of God that I can be changed in this way.
Your birthday is coming soon, and I seem to have realized that we have to celebrate it without you. I cry for so many reasons these days, but today as I try to get the energy to bring out your baby book, I am shedding more tears of remembering. It would be nice to finish your baby book, and have it to reflect on when we visit your grave. Just thinking about your baby book, brings on the reflections.
I remember the day you were born. After hours of labour, you suddenly came so fast that you had a moment where you stopped breathing and your heart rate dropped. I remember hearing the nurse call a code, and of course, I knew exactly what that meant. We prayed for you immediately. Within moments of your arrival, you were already lifted up in prayer. You rallied quickly and when we went home with you, we had already forgotten the minor blip.
I remember the first couple weeks, as you struggled to latch when I nursed you. I thought you were teaching me patience! I could not pull your head toward me, because you would arch away from me if I touched the back of your head. Instead, I would position you on the nursing pillow and lean in, waiting quietly until you were able to start sucking on your own.
Those first two months of loving you without the knowledge of your disability, was a blessing. I always had uncertainties, but also felt that I was hormonal and paranoid. So, I quickly put aside any feelings of dread.
When you were two weeks old, we saw your pediatrician for a regular appointment. I remember when he asked me if I had any concerns. I spoke an immediate, 'Yes', and then followed it by shrugging and stating that I had nothing concrete to base my concerns on. I told him of the eye flicking and of your back arching away from me when I tried to feed you. We decided that babies do all sorts of strange things in the beginning, and we would keep an eye out for anything else.
I remember trying to position you for a "One Month Photo" and commenting on your incredibly floppy head. I look at the photo and see your head drifting down to the side, and remember how long I tried to get your head into a nice position, and how baffled I was that you had absolutely no head control. You were a limp noodle for the first year of your life. Of course, it all became clear when the more obvious seizures brought us in to emerg for the first time.
That happened right after Easter, when you were two months old, Ashley. That was the beginning of a new normal for us, and I hardly even remember that first two months of blissful ignorance. But I do know that the blessing of knowing you without labels gave me something I needed when they told me that you would be severely handicapped. The word, 'handicapped', scared me and I didn't know how to deal with that. Then I looked at you, Ashley, my beautiful baby that I already loved and accepted just as you were, and I knew that no 'word' could make me stop loving you.
I remember sitting in the hospital room, staring at you in my arms and repeating, "I love you right now and always." All the negative power held in the word 'handicapped' was eliminated when I focused on loving you in the present. I love you still, Ashley.
Love,
Mommy
Where does that leave me now? I don't have her to hold anymore. What do I do with my tears and my longing?
Although I do this imperfectly, I will try to follow what faith has taught me in the last years. I will offer up all my suffering and love to Jesus. He knows me and understands me perfectly. I can cry out all my hurt to Him, as often as I want, and he will never grow bored or irritated. His merciful heart soothes my soul and eventually brings me back to the present, fully nourished and ready to love others with the power of His love. If suffering leads me to love, then I must accept it gratefully. But I am no saint, it is only by prayer and the power of God that I can be changed in this way.
Tuesday, December 27, 2011
Being present!
For Christmas, Alex gave me a very thoughtful gift. He disregarded my practical list of wants (ie. cookie sheets, new pillows, electric jug kettle) and found me a digital photo frame. But he didn't leave it at that! He took the time to install all of our photos of Ashley and Hope onto the memory card, along with a 'Title Slide'. When I opened the gift, I was able to plug it in and watch the memories slide by. It has been wonderful, and tearful. Yesterday, I cried, and cried and cried (and I'm sure Alex was second-guessing his choice), but I was still glad to have the gift. It is an amazing thing to have such a thoughtful husband.
Today, we watched old video of Ashley and Hope as babies, and I am soooo happy. We have so many wonderful memories. It is so good to be reminded of all the good effort we made to create memories with the girls. It is good to see the times we spent playing with Brodie while Ashley smiled and Hope coo'd. It is good to remember that it wasn't always hard and difficult and stressful. Oh yes, it is very good. Today I feel at peace with my memories of Hope and Ashley, but I still have trouble believing that they are gone and no new memories will ever be made.
As I watch the photos drift by on my new digital frame, I am realizing something. When I took pics in the past, I always aimed for a nice photograph. I tried to catch a pretty smile, or a 'look' that I wanted to remember, or maybe set the child up in a position that looked 'normal'. Now, I find myself disregarding those pics in favor of the shots that show love. When I see someone holding one of my children with a tender look, or gazing at one of them, or just attempting to hold the girls even though it was awkward, then I smile. I love seeing that the girls were loved. Isn't that what life come down too? It's simply all about loving!
Today, we watched old video of Ashley and Hope as babies, and I am soooo happy. We have so many wonderful memories. It is so good to be reminded of all the good effort we made to create memories with the girls. It is good to see the times we spent playing with Brodie while Ashley smiled and Hope coo'd. It is good to remember that it wasn't always hard and difficult and stressful. Oh yes, it is very good. Today I feel at peace with my memories of Hope and Ashley, but I still have trouble believing that they are gone and no new memories will ever be made.
As I watch the photos drift by on my new digital frame, I am realizing something. When I took pics in the past, I always aimed for a nice photograph. I tried to catch a pretty smile, or a 'look' that I wanted to remember, or maybe set the child up in a position that looked 'normal'. Now, I find myself disregarding those pics in favor of the shots that show love. When I see someone holding one of my children with a tender look, or gazing at one of them, or just attempting to hold the girls even though it was awkward, then I smile. I love seeing that the girls were loved. Isn't that what life come down too? It's simply all about loving!
I know I've been struggling with thoughts of failure, as I remember how busy it was last year. I felt like I didn't get the chance to love because I busied myself too much. But isn't that how a mom of four kids is likely to feel at some point? Obviousely, I need to cut myself some slack, and 'yes', I know that's what you've all been encouraging me to recognize, but I needed to find that truth on my own. Today, after watching the video's and enjoying the slideshow, I finally knew that I did have my priorities straight pretty often. Showing love and choosing to act with love is what has brought me the most happy memories.
Activities and pretty clothes and a nicely decorated room? Well, those things mean nothing now, after the death of one's child. Because my best memories come with the photos where I was looking at my child and just enjoying the moment. I wasn't troubling myself about something in the past, or concentrating on what I would get ready for supper, I was just present with my child.
Life happens in the present, and meaning is found in the present, not the past or the future. It's a powerful thing to recognize that you need to be present with your child and love them right now. It changes how I interact with Brodie and Mira and I really hope I never forget this lesson.
Saturday, December 24, 2011
Merry Christmas
I tried to make a slideshow to share, so that I could wish everyone Merry Christmas. I couldn't do it. I started looking through the photos of this year, and past years, and I wilted. I'm not even sure why, but the heavyness persisted, and I just couldn't make a slideshow. I shouldn't be surprised, but I am.
I hope each one of you is celebrating the blessings in your midst!
Merry Christmas from all of us.
I hope each one of you is celebrating the blessings in your midst!
Merry Christmas from all of us.
Subscribe to:
Posts (Atom)
