Mira is two years old, and as you can see she blesses us with her singing often.
Tuesday, November 6, 2012
Thankful!!!
I am so thankful for little hands that tickle the piano keys, for a little voice that sings, for a little girl who is blissfully unaware of how amazed mommy is by everything she does!
Mira is two years old, and as you can see she blesses us with her singing often.
Mira is two years old, and as you can see she blesses us with her singing often.
Thursday, October 25, 2012
School memories
Before Ashley, I rarely thought about school and how well a child with special needs would fit in or be included. I remember the first time we discussed what the future would look like and a health care professional mentioned school. At the time, Ashley was six months old and seizing more than 100 times a day. I laughed at the idea of school, brushed the idea aside and tried to move the discussion to more pertinent issues. I was firmly told that EVERY child goes to school. Well, I have to admit that I wasn't too impressed by the implication that I had no say in the matter.
I had no plans to send Ashley to school, unless it was clear that it would be good for her. She was looking better at four and half years old, and actually needing more stimulation. I started thinking that school might be a good thing. Our physiotherapist and occupational therapist encouraged us with stories of other special needs children who blossomed in the school system. I could see that Ashley was positively stimulated by other kids and eventually we agreed that 'yes' school would be a good thing. I had no idea what a blessing it would be.
I am sharing this because I know of a family who has a child with special needs, who was denied admission to a large christian school here in Winnipeg. Their older son was already in attendance at the school. Of course it is not a problem for a school to reject an applicant for a good reason. It would be completely justified and understandable if the school stated that it did not have the resources or proper facility to provide for the special needs of a child.
What I don't understand is why the parents would be subjected to, what sounds like, a harsh and cruel attitude when discussing their daughter. Why would a Principal say that it would not be good for the older son to have his sister in the same school? Especially when the son was so excited to have his sister at school. He had a picture of her in his locker, and was eager to share his experiences with her when he got home. Why would a Principal go on to say that older students would not benefit from volunteering with the special needs child, and worse, that they have better places to spend there time?
I suppose I shouldn't be surprised that there are still people who see a child with special needs and only see the burden, the disability and the problems. But I cried when I heard this because my greatest yearning was for others to see the value in my special girls. My heart broke for the parents as I imagined what it would feel like to hear your child rejected because of their disability. To be told, to your face that your child wasn't worthy or valued. To be told that your child is a burden that no one would benefit learning from.
So, here I am to tell you of my experience with Ashley going to school. Ashley was wonderfully recieved by the entire faculty and the students at Chancellor school. We were pleasantly surprised at the positive attitude of every staff member that we worked with. We really felt that Ashley's presence was valued and highly anticipated. I did not expect such a high level of acceptance, and something else occurred that I didn't expect. Ashley was loved.
It brings tears to my eyes as I remember the day that I realized Ashley had become part of her own little community, full of beautiful children and teachers who truly loved and accepted her. It was the day we returned to Ashley's class to remember her life and we were joined by some students, mom's, and teachers. They had a slideshow of pictures and as the photo's rolled by, my eyes were opened to Ashley's world at school. Children reading to Ashley, holding her hand, and taking turns pushing her wheelchair. Ashley in the arms of her EA during music time and circle time. Ashley sharing her favorite book, 'The Little Engine Who Could', with the children gathered around paying close attention.
Most striking were the multiple photos of one little girl, who was showed up often at Ashley's side. Ashley had a best friend. I didn't find this out until I met Taylor's mom at the remembrance. Taylor's mom had heard a lot about Ashley, and what the girls played with and where they sat, but she did not know that Ashley was in a wheelchair until she saw the school photo of the kindergarten class. Taylor had never mentioned Ashley's disabilities. Taylor loved Ashley just the way she was. That is the beauty of children.
That is the blessing of a having a child with special needs in the classroom. Children are very accepting of differences, especially when their teachers model that acceptance. Without even knowing it, children develop compassion and understanding for the differences in others and it becomes a non-issue.
Taylor still has 'Ashley's pink bear' that we gave her, and the photo of the two of them in her room. I met Taylor and her mom at Brodie's hockey practice the other weekend and was pleasantly surprised that they remembered Ashley. What a special gift.
I had no plans to send Ashley to school, unless it was clear that it would be good for her. She was looking better at four and half years old, and actually needing more stimulation. I started thinking that school might be a good thing. Our physiotherapist and occupational therapist encouraged us with stories of other special needs children who blossomed in the school system. I could see that Ashley was positively stimulated by other kids and eventually we agreed that 'yes' school would be a good thing. I had no idea what a blessing it would be.
I am sharing this because I know of a family who has a child with special needs, who was denied admission to a large christian school here in Winnipeg. Their older son was already in attendance at the school. Of course it is not a problem for a school to reject an applicant for a good reason. It would be completely justified and understandable if the school stated that it did not have the resources or proper facility to provide for the special needs of a child.
What I don't understand is why the parents would be subjected to, what sounds like, a harsh and cruel attitude when discussing their daughter. Why would a Principal say that it would not be good for the older son to have his sister in the same school? Especially when the son was so excited to have his sister at school. He had a picture of her in his locker, and was eager to share his experiences with her when he got home. Why would a Principal go on to say that older students would not benefit from volunteering with the special needs child, and worse, that they have better places to spend there time?
I suppose I shouldn't be surprised that there are still people who see a child with special needs and only see the burden, the disability and the problems. But I cried when I heard this because my greatest yearning was for others to see the value in my special girls. My heart broke for the parents as I imagined what it would feel like to hear your child rejected because of their disability. To be told, to your face that your child wasn't worthy or valued. To be told that your child is a burden that no one would benefit learning from.
So, here I am to tell you of my experience with Ashley going to school. Ashley was wonderfully recieved by the entire faculty and the students at Chancellor school. We were pleasantly surprised at the positive attitude of every staff member that we worked with. We really felt that Ashley's presence was valued and highly anticipated. I did not expect such a high level of acceptance, and something else occurred that I didn't expect. Ashley was loved.
It brings tears to my eyes as I remember the day that I realized Ashley had become part of her own little community, full of beautiful children and teachers who truly loved and accepted her. It was the day we returned to Ashley's class to remember her life and we were joined by some students, mom's, and teachers. They had a slideshow of pictures and as the photo's rolled by, my eyes were opened to Ashley's world at school. Children reading to Ashley, holding her hand, and taking turns pushing her wheelchair. Ashley in the arms of her EA during music time and circle time. Ashley sharing her favorite book, 'The Little Engine Who Could', with the children gathered around paying close attention.
Most striking were the multiple photos of one little girl, who was showed up often at Ashley's side. Ashley had a best friend. I didn't find this out until I met Taylor's mom at the remembrance. Taylor's mom had heard a lot about Ashley, and what the girls played with and where they sat, but she did not know that Ashley was in a wheelchair until she saw the school photo of the kindergarten class. Taylor had never mentioned Ashley's disabilities. Taylor loved Ashley just the way she was. That is the beauty of children.
That is the blessing of a having a child with special needs in the classroom. Children are very accepting of differences, especially when their teachers model that acceptance. Without even knowing it, children develop compassion and understanding for the differences in others and it becomes a non-issue.
Taylor still has 'Ashley's pink bear' that we gave her, and the photo of the two of them in her room. I met Taylor and her mom at Brodie's hockey practice the other weekend and was pleasantly surprised that they remembered Ashley. What a special gift.
Sunday, September 9, 2012
Memorial Stone
Larsen's did a wonderful job of Ashley and Hope's memorial stone. This is the photo they sent us before it was installed at St. Vital Cemetary. Next year, I look forward to planting some pink and purple flowers under the stone. Right now I still have the yellow sunflowers marking the spot, along with this stone. So, it's easy to find if anyone finds themselves wishing to visit.
Friday, August 24, 2012
Avoidance
The anniversary of Hope's death, holds the significance of being an 'ending'. I am finding that I grieve the loss of both my girls and everything that came with them at this point.
On Aug. 14th I wrote in my journal:
Today is Hope's heaven day. It has been one year since she died. Today marks the day when our journey with our special girls ended.
Today I grieve the loss of both my girls; cuddles on the front step during a coffee break; walks to the park so we could lie down on a blanket and watch the leaves dance on the trees; tea parties with Brodie; saturday morning baths and hair do's; a soft cheek next to mine as I hum a song.
Today I grieve the loss of our daily companions, our respite workers who helped, nourished and strengthened us without even knowing it.
Today I grieve the loss of 7am medication prep, diaper changes and fluctuating schedules...a 'busy'ness that gave me purpose and direction as I pushed away any 'sad' feelings.
Today marks the day when our lives changed with a certain finality. I still wonder at this change. Although I am living the new normal, it feels odd that life just continues. It should be easier, but somehow it is really hard.
It's interesting that I've felt fairly good about how this year has gone, and then suddenly I was hit by the loss. Reading about Hayden's death (the link to his blog is on the side), I find myself identifying with everything that Lauren is writing. I find myself remembering and hurting...a lot. And I realize that I have done a good job of avoiding the sad feelings, avoiding thoughts of the girls, avoiding the cemetary and avoiding this blog.
Of course, I had my moments where I allowed myself to think, to feel and remember. The obvious moments were easy (birthdays and anniversaries), and allowable, but they slowed me down. A visit to the cemetary would depress my energy level so much that I would struggle for a few days, with a physical and mental exhaustion that always surprised me. I didn't think about it much, I just tried to get through it without getting frustrated. Because I didn't think about it, and acknowledge what was happening, I instinctively avoided the cemetary.
The same thing happened with this blog. To sit down and write about this process, left me open to all my sadness and hurt. I felt too busy to be burdened by such overwhelming feelings of exhaustion, so I avoided the blog more often. Of course, I still had posts, but many of the things I would have posted remained in my head.
I kept myself busy at home, distracted with kids, work and books, and it worked for me. I'm not saying that this was wrong. I'm not saying that I never allowed sad moments. But I am surprised to see that I have avoided a lot of the sad feelings, when I thought I was doing okay with them. There is no right or wrong in grieving...it just is what it is.
I'm reflecting on this, because I've had a hard week. My struggle this week has been incredibly intense, and I wonder if it's because the one year anniversary has left me with a whole lot of emotion. Emotion that I have been avoiding.
I'm sitting myself down to reflect and re-evaluate. So far I've had to remind myself of these truths:
1. Death hurts and it is natural to feel heart-broken
2. It's okay that no one but God knows how I truly feel
3. Friends who listen without trying to fix are valuable
4. My own grief journey is unique and I don't have to meet anyone's expectations
5. I am perfectly loved and accepted right now and always by my God who understands everything.
6. Sad feelings, tears, moving slower and a messy house does not mean I am falling apart
I probably have a lot more to learn, but don't concern yourself with that. I am writing because it helps me a lot. I am also writing because someone might find something useful in what I am sharing. My loss might be unique, but perhaps you can identify with some aspect of my process. It is when we share our struggles, that we find support.
We are blessed that it is not all a struggle. We remember Hope wearing this beautiful dress from her Grandma, at Easter, 2009.
On Aug. 14th I wrote in my journal:
Today is Hope's heaven day. It has been one year since she died. Today marks the day when our journey with our special girls ended.
Today I grieve the loss of both my girls; cuddles on the front step during a coffee break; walks to the park so we could lie down on a blanket and watch the leaves dance on the trees; tea parties with Brodie; saturday morning baths and hair do's; a soft cheek next to mine as I hum a song.
Today I grieve the loss of our daily companions, our respite workers who helped, nourished and strengthened us without even knowing it.
Today I grieve the loss of 7am medication prep, diaper changes and fluctuating schedules...a 'busy'ness that gave me purpose and direction as I pushed away any 'sad' feelings.
Today marks the day when our lives changed with a certain finality. I still wonder at this change. Although I am living the new normal, it feels odd that life just continues. It should be easier, but somehow it is really hard.
It's interesting that I've felt fairly good about how this year has gone, and then suddenly I was hit by the loss. Reading about Hayden's death (the link to his blog is on the side), I find myself identifying with everything that Lauren is writing. I find myself remembering and hurting...a lot. And I realize that I have done a good job of avoiding the sad feelings, avoiding thoughts of the girls, avoiding the cemetary and avoiding this blog.
Of course, I had my moments where I allowed myself to think, to feel and remember. The obvious moments were easy (birthdays and anniversaries), and allowable, but they slowed me down. A visit to the cemetary would depress my energy level so much that I would struggle for a few days, with a physical and mental exhaustion that always surprised me. I didn't think about it much, I just tried to get through it without getting frustrated. Because I didn't think about it, and acknowledge what was happening, I instinctively avoided the cemetary.
The same thing happened with this blog. To sit down and write about this process, left me open to all my sadness and hurt. I felt too busy to be burdened by such overwhelming feelings of exhaustion, so I avoided the blog more often. Of course, I still had posts, but many of the things I would have posted remained in my head.
I kept myself busy at home, distracted with kids, work and books, and it worked for me. I'm not saying that this was wrong. I'm not saying that I never allowed sad moments. But I am surprised to see that I have avoided a lot of the sad feelings, when I thought I was doing okay with them. There is no right or wrong in grieving...it just is what it is.
I'm reflecting on this, because I've had a hard week. My struggle this week has been incredibly intense, and I wonder if it's because the one year anniversary has left me with a whole lot of emotion. Emotion that I have been avoiding.
I'm sitting myself down to reflect and re-evaluate. So far I've had to remind myself of these truths:
1. Death hurts and it is natural to feel heart-broken
2. It's okay that no one but God knows how I truly feel
3. Friends who listen without trying to fix are valuable
4. My own grief journey is unique and I don't have to meet anyone's expectations
5. I am perfectly loved and accepted right now and always by my God who understands everything.
6. Sad feelings, tears, moving slower and a messy house does not mean I am falling apart
I probably have a lot more to learn, but don't concern yourself with that. I am writing because it helps me a lot. I am also writing because someone might find something useful in what I am sharing. My loss might be unique, but perhaps you can identify with some aspect of my process. It is when we share our struggles, that we find support.
We are blessed that it is not all a struggle. We remember Hope wearing this beautiful dress from her Grandma, at Easter, 2009.
Mira wore that same dress to a wedding this summer. Watching that dress dance and twirl around Mira gave me incredible joy as I thought of Ashley and Hope dancing in heaven.
Tuesday, August 14, 2012
Hope's Day
One year ago today, we held Hope for the last time. Her hair was braided, she was wearing her beautiful, handmade, dress that reminded me of a rainbow. We wrapped her in her special blanket and wondered how we could let her go. And then we watched as the long, black vehicle slowly drove away down our street. Even now, I get tears in my eyes when I see a funeral car.
We are so grateful to the show of support at Hope's funeral, and for the meals and cards and emails and donations. Thank you to everyone.
We just cried a few tears as we watched Hope's funeral slideshow, and now we're heading over to the cemetary as a family. The memorial stone isn't there yet, but will be in about a month. I hope you're able to watch the slideshow and remember our beautiful Hopey with us.
Love,
Jolene & Alex
Tuesday, July 10, 2012
Happy Birthday Hopey!
Five years ago, we held your beautiful, tiny, newborn body in our arms.
And then something wonderful happened. You started smiling at 3 weeks old. You seemed to smile right at me.
Soon, your smiles and coo's had us marvelling at you in wonder. You could move your arms and wave them around. You could drink your bottle and bounce yourself out of your chair.
At one year old, you were still doing well. Seizures were not an issue, and you could eat from a spoon. You were always hungry! We had to have your meat, veggies, fruit and two bottles, lined up and ready to go when you woke up from your nap, because you would scream your displeasure if the food didn't come fast enough. Oooh, you were sooo cute!!!
We were taken by surprise, when you were found seizing one morning. You were 14 months old, and the seizures didn't stop, until...after many emergency meds, you stopped breathing, and the team in ER kept you alive with an oxygen mask, attached to a bag that could force air into your lungs. I will never forget how your dad and I stood together and prayed for you, hoping that we would not be the ones to decide if it was your time to go. You started breathing on your own after 40 minutes.
We took you home at the end of the week, with you still having periods of apnea, not sure if you would survive more than a couple days. You stayed with us, but the seizures ruled the house, and you didn't eat anymore. Eventually the smiles were gone, and with numerous new medications, you became our limp baby doll. It was time for a different type of care, and different expectations, and a feeding tube.
I am so grateful for the added years. I remember holding you and wishing for big smiles to return, on your second birthday (and being grateful for the soft, subtle smiles that you blessed us with).
Eventually your smiles came back, and here you are at three years old.
And now we look at last years birthday pics...four years old. We wonder how it is possible that a year has passed, but your memory is as fresh as if you were here in our arms yesterday.
Last week, you would have been five years old. We remembered you as we watched your slideshow, and let five purple balloons go into the sky.
As I recall your life and Ashley's life, I feel so fortunate to have been blessed by you both. It's hard to describe how a life that sounds 'tragic' to some, can be so beautiful to remember. I know I struggled at times, but it's only because of my struggle that I can see God's hand at work through it all. Your life was a gift that shaped me in a way that is good for my soul. My struggle through the emotions, the work and the rollercoaster of illnesses, made it possible for me to see my weakness and therefore, see God's strength.
As I worked through my feelings of anger, loneliness, and sadness this year, I slowly became more aware of this fact...I would not wish you or Ashley away. I would not exchange you for a more 'perfect' child. Every child is a blessing, whether we choose to see it or not.
I love you, Hopey. Happy Birthday!
Friday, June 1, 2012
Pray a thank you
I came across this photo of Hopey, taken in December of 2008. I paused because Mira is now wearing that same sleeper and often has the same little pigtails. It's felt a little confusing to look at Hopey laying there in my arms, trying to take a bottle, and then look at Mira wearing the princess sleeper, but she's running around and saying words.
I look at Hopey in this picture and remember, but it is strange to be remembering, when it feels like yesterday. Ashley and Hope aren't here, but they don't feel far away. I miss them each day, but I don't think of them every moment. I'm grieving inside but I'm functioning and joyful on the outside.
Life is full of contradictions.
This next photo reminds me of all the photos I have of Brodie cuddling Ashley or Hope. How many times a day do we marvel and wonder at the blessing of Mira and Brodie in our lives? It is ongoing...
And at the same time, we wonder at the blessings of having had Ashley and Hope in our lives. How would we have appreciated the deep joy of two healthy children, without the experience of our journey with Ashley and Hope?
Mira puts her warm, chubby arms around my neck and squeezes tight
and I pray a thank you
Mira sings out her joy in church with no thought for those who might want to hear the homily
and I pray a thank you
Mira runs at Brodie with her arms open wide, tackling him with her hug
and I pray a thank you
Brodie reminds me that we should help Mira know the girls, by making her a special book
and I pray a thank you
Brodie takes Mira by the hand and lovingly shows her the butterfly's that symbolize life
and I cry a little as I pray a thank you.
Wednesday, April 11, 2012
A glimpse
All day long, I have glimpses of Ashley and Hope as our screensaver rolls cycles through our photo files. Glimpses of different parts of the journey, bring memories, smiles and sometimes tears. It keeps me connected to their memory in the midst of the busy demands of life. It slows me down and reminds me of the importance of loving...right now in each moment.
It's interesting that Mira does not remind me of Ashley, or of Hope. When she was younger, I definitely saw bits of Hope in her, but not anymore. Mira has her own look. She does everything that the girls did not do, and I still feel that 'Wow' feeling in response.
I had wondered if the screensaver photos would someday cause me pain, knowing that there would be no new pics of Ashley and Hope. I wondered how I would look at those same pictures, year after year, with nothing new to add to them. I wondered how it was even possible that I would never take another picture of Ashley and Hope.
As the months went by, I eventually noticed something. I did not have new pictures of Ashley and Hope, but my screensaver was not becoming a stagnant pool of old memories. The old memories were being enhanced and built upon by new photos of Brodie and Mira. The old photos ran right along side the new photos, and suddenly I saw that Mira's growth and development would help me keep moving forward.
A picture of Ashley... a picture of Hope... a picture of Mira walking, playing with a doll and showing us so much more. Little bits of sad remembering balanced by joyful hope in the future. What a blessing.
It's interesting that Mira does not remind me of Ashley, or of Hope. When she was younger, I definitely saw bits of Hope in her, but not anymore. Mira has her own look. She does everything that the girls did not do, and I still feel that 'Wow' feeling in response.
I had wondered if the screensaver photos would someday cause me pain, knowing that there would be no new pics of Ashley and Hope. I wondered how I would look at those same pictures, year after year, with nothing new to add to them. I wondered how it was even possible that I would never take another picture of Ashley and Hope.
As the months went by, I eventually noticed something. I did not have new pictures of Ashley and Hope, but my screensaver was not becoming a stagnant pool of old memories. The old memories were being enhanced and built upon by new photos of Brodie and Mira. The old photos ran right along side the new photos, and suddenly I saw that Mira's growth and development would help me keep moving forward.
A picture of Ashley... a picture of Hope... a picture of Mira walking, playing with a doll and showing us so much more. Little bits of sad remembering balanced by joyful hope in the future. What a blessing.
Saturday, March 17, 2012
One Year
I have not found myself marking the months consistently but the one year mark is screaming at me for attention. Tommorrow, it will be one year since Ashley took her last breath in our arms. How is it possible that we have watched one child pass away from us, and then another...
Knowing that this day was coming, I have been posting more about Ashley. Sensing that this weekend will be hard, I've been doing a lot of thinking. How do we commemorate the day, and how do we make the day special? I had heard some wisdom that it is best to go away for the first anniversary, so we had planned a trip. Well, the flu hit our house last Saturday, and one by one we have each gotten sick. Mira was puking most of Saturday night. After a couple hours of puking she had nothing left in her stomach and she would just roll over and heave in my arms. She reminded me SO MUCH of Hope in that moment. Alex got sick while he was away on a work trip (poor guy) and I got sick next. Today, Brodie started puking. So...no travelling. Sound familiar?
It's kind of appropriate actually. Our life with Ashley and Hope involved a lot of hands on care, holding and cleaning up. We made our life at home as simple as possible (as the girls became sicker especially) and avoided a lot of activities so that we could take care of them better and minimize stress. And here we find ourselves again, as we remember Ashley. Instead of a trip out to Elkhorn, we are staying home to do what's best for our family and that feels right.
We'll still remember Ashley and look at her baby book, as well as her slideshows. Tommorrow we'll be able to go to the cemetary if Brodie is feeling well enough and maybe even sit there for a picnic. We'll sing Ashley and Hope the songs we used to sing to them, and know that they are singing with us now. Tommorrow is Ashley's heaven birthday. We'll celebrate the six years we were given to love and hold our special girl.
Knowing that this day was coming, I have been posting more about Ashley. Sensing that this weekend will be hard, I've been doing a lot of thinking. How do we commemorate the day, and how do we make the day special? I had heard some wisdom that it is best to go away for the first anniversary, so we had planned a trip. Well, the flu hit our house last Saturday, and one by one we have each gotten sick. Mira was puking most of Saturday night. After a couple hours of puking she had nothing left in her stomach and she would just roll over and heave in my arms. She reminded me SO MUCH of Hope in that moment. Alex got sick while he was away on a work trip (poor guy) and I got sick next. Today, Brodie started puking. So...no travelling. Sound familiar?
It's kind of appropriate actually. Our life with Ashley and Hope involved a lot of hands on care, holding and cleaning up. We made our life at home as simple as possible (as the girls became sicker especially) and avoided a lot of activities so that we could take care of them better and minimize stress. And here we find ourselves again, as we remember Ashley. Instead of a trip out to Elkhorn, we are staying home to do what's best for our family and that feels right.
We'll still remember Ashley and look at her baby book, as well as her slideshows. Tommorrow we'll be able to go to the cemetary if Brodie is feeling well enough and maybe even sit there for a picnic. We'll sing Ashley and Hope the songs we used to sing to them, and know that they are singing with us now. Tommorrow is Ashley's heaven birthday. We'll celebrate the six years we were given to love and hold our special girl.
Forever we will love you Ashley!
Sunday, February 26, 2012
Sadness
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.
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.
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.
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