Yesterday at church, I saw a woman put her arm around a young man in our congregation, and it made me tear up. It touches me every time I see someone welcome and accept a person with Down syndrome, because I feel they would have accepted my daughter.
I hope you will take a few minutes to watch this video. It just says it all. I love the way Kelle Hampton advocates for her daughter and all people with Down syndrome.
I am missing my Liza Jane these days. I wish I could have seen her grow up and find out what her interests would have been.
One message in this video is to "be the change" you want to see. I hope I will have the grace to extend love and acceptance to all those who cross my path.
Showing posts with label Down syndrome. Show all posts
Showing posts with label Down syndrome. Show all posts
Monday, January 21, 2013
Sunday, December 30, 2012
Still Learning
I'm still learning about this thing called grief and what it means.
This week I had a goal to clean out our Liza Jane's closet. It's the last thing in her room that I haven't gone through. All of her clothes were in there, neatly organized by her Mimi more than two years ago when we arranged her room in anticipation of her birth.
She never made it out of the Newborn size sleepers and into the 0-3 month size, partly because her heart condition made it difficult to eat and gain weight.
All the baby clothes she never got to wear were just one more reminder that her precious life was ended far too soon. As I folded a sweet little pair of jammies with colorful hearts on it, I cried because she never made it into the three month size range.
I remembered the stages of grief when I was six months pregnant and we learned that she had Down syndrome. People with Down syndrome tend to be small for their age, even without a heart condition. So would she have gotten big enough to fit into that three month sleeper before the weather got too warm for her to wear it? I will never know.
This task of cleaning her closet is a very necessary one, because we are in the process of adopting a sibling group of children. We don't know yet who our future children will be, but we are actively going through a matching process. And the room that was Liza's needs to be ready for our children.
Last night we had a beautiful snowfall. I had a rough time last night after meeting a friend's newborn baby for the first time yesterday. All the feelings of anger, rage, and deep sorrow came rushing back.
Ordinarily, snow like this gives me a giddy, happy childhood feeling. I waltz around the house singing "Let it snow, let it snow, let it snow," while making cups of hot tea. This time, though, I felt I was clinging onto a shred of my former self. I was sad, I was depressed, I could hardly function.
So, I'm still learning what it means to grieve the loss of a child. Tuesday will be two years since she died, and sometimes the loss is still fresh, as if it happened yesterday. She just didn't have enough time. I didn't have enough time to love her, to be Liza Jane's mommy. The pain is still there, churning in the core of my being. And it is still hard.
This week I had a goal to clean out our Liza Jane's closet. It's the last thing in her room that I haven't gone through. All of her clothes were in there, neatly organized by her Mimi more than two years ago when we arranged her room in anticipation of her birth.
She never made it out of the Newborn size sleepers and into the 0-3 month size, partly because her heart condition made it difficult to eat and gain weight.
All the baby clothes she never got to wear were just one more reminder that her precious life was ended far too soon. As I folded a sweet little pair of jammies with colorful hearts on it, I cried because she never made it into the three month size range.
I remembered the stages of grief when I was six months pregnant and we learned that she had Down syndrome. People with Down syndrome tend to be small for their age, even without a heart condition. So would she have gotten big enough to fit into that three month sleeper before the weather got too warm for her to wear it? I will never know.
This task of cleaning her closet is a very necessary one, because we are in the process of adopting a sibling group of children. We don't know yet who our future children will be, but we are actively going through a matching process. And the room that was Liza's needs to be ready for our children.
Last night we had a beautiful snowfall. I had a rough time last night after meeting a friend's newborn baby for the first time yesterday. All the feelings of anger, rage, and deep sorrow came rushing back.
 |
| The tree in our front yard, covered in snow. |
Ordinarily, snow like this gives me a giddy, happy childhood feeling. I waltz around the house singing "Let it snow, let it snow, let it snow," while making cups of hot tea. This time, though, I felt I was clinging onto a shred of my former self. I was sad, I was depressed, I could hardly function.
So, I'm still learning what it means to grieve the loss of a child. Tuesday will be two years since she died, and sometimes the loss is still fresh, as if it happened yesterday. She just didn't have enough time. I didn't have enough time to love her, to be Liza Jane's mommy. The pain is still there, churning in the core of my being. And it is still hard.
Wednesday, March 21, 2012
A Special Day
Honoring the ones we have loved and lost is an important part of grief. Today, in memory of our sweet Liza Jane, here is a shout out for 3/21. Today is World Down Syndrome Day.
This is celebrated internationally on March 21, symbolic of a third copy of the 21st chromosome that characterizes Down syndrome. This year the celebration is amplified as it is the first time that the date is officially recognized by the United Nations.
I'm joining NDSS to "do something extra" in honor of those with an extra 21st chromosome. Here I sit on my couch, tired after working an extra long day, ready to veg out. But I don't want to throw in the towel on the day without taking a moment to honor my sweet baby girl.
Just a few short decades ago, people with Down syndrome in this country were committed to institutions where they were given little opportunity to thrive. You can vist here for one person's story about how it used to be.
Today, people with Down syndrome live productive and meaningful lives. They go to school with all the other kids, and most of them graduate with their high school class. Some even go on to college, and many have jobs when they are older.
Despite all this progress, people with Down syndrome are more at risk for not making it into the world than ever, due to new prenatal tests that are now available. I think it's sad, because now is probably the best time ever for these individuals to be alive in our society. When their diagnosis is discovered prenatally, though, about 90% of mothers make a choice to end their lives.
So today, I want to send a big hug out to all those who know and love somebody with Down syndrome. And to all the people born with Down syndrome, thank you for making this world a better place, for bringing a little something extra to our lives. We are all better off because of you.
This is celebrated internationally on March 21, symbolic of a third copy of the 21st chromosome that characterizes Down syndrome. This year the celebration is amplified as it is the first time that the date is officially recognized by the United Nations.
I'm joining NDSS to "do something extra" in honor of those with an extra 21st chromosome. Here I sit on my couch, tired after working an extra long day, ready to veg out. But I don't want to throw in the towel on the day without taking a moment to honor my sweet baby girl.
Just a few short decades ago, people with Down syndrome in this country were committed to institutions where they were given little opportunity to thrive. You can vist here for one person's story about how it used to be.
Today, people with Down syndrome live productive and meaningful lives. They go to school with all the other kids, and most of them graduate with their high school class. Some even go on to college, and many have jobs when they are older.
Despite all this progress, people with Down syndrome are more at risk for not making it into the world than ever, due to new prenatal tests that are now available. I think it's sad, because now is probably the best time ever for these individuals to be alive in our society. When their diagnosis is discovered prenatally, though, about 90% of mothers make a choice to end their lives.
So today, I want to send a big hug out to all those who know and love somebody with Down syndrome. And to all the people born with Down syndrome, thank you for making this world a better place, for bringing a little something extra to our lives. We are all better off because of you.
Monday, January 2, 2012
Happy New Year
Would Liza have liked this?
That's the question that goes through my mind just about anywhere I go. We got to visit the floor of the Grand Canyon during our New Years trip, and it was all I could think about the entire time.
In the past, I would have been much more focused on absorbing the colors and the sights, capturing forever in my memory the experience, being thankful that I have eyes that can see and legs that can carry me to places like this.
Don't get me wrong, I am truly grateful that I have had the opportunity to visit such an amazing sight. Since she left us, though, everything is different. My first thought at very turn is, "would she like this? Would she have wanted to do this with us?"
We will never know, though, what our little girl's preferences would have been, what she would like and dislike. What her favorite color would have been, or her favorite bedtime story, or her favorite bath toy.
I don't know what is more difficult for parents who have lost a child: losing them young enough that they have to wonder who they would have become, or losing them at an older age. One family I have been following tragically lost a daughter at 5 years old, and many of her favorite things bring back constant memories of her. Each circumstance is difficult and unique.
What further complicates the questions about Liza's preferences for me is the fact that she was born with Down syndrome. I haven't written yet about how we were prenatally diagnosed, which I will do someday. Suffice it to say that Luke and I knew our girl would come with a special extra chromosome in every cell of her body. About half of the individuals born with Down syndrome also have a congenital heart defect. Usually these are very operable, but in Liza's case, it was a more complicated defect, and in the end she did not survive the recovery after surgery. She passed away at just over seven weeks of age.
I don't know very many people with Down syndrome, but from talking with friends who are priveleged enough to have close family members with this condition, I know they don't always enjoy the same things as others might.
So on this trip, I was wondering, would Liza have liked the helicopter ride that brought us to the Grand Canyon floor? Would she have enjoyed the experience of being in these surroundings like her daddy and I did? Or maybe she would not have been comfortable in this environment, would not have found it fun, but rather scary or irritating. It's one of many questions to which we'll never know the answer.
In the meantime, I think of her wherever I am, wondering what it would be like if she were here. This poem has been on my heart today as I remember her, one day after the anniversary of her death, so I will close with these words.
Have a blessed year in 2012, everyone. Hold close those that you love and thank God every day for their lives. We don't know the number of days that each of us will have, and every moment we are granted together is precious.
That's the question that goes through my mind just about anywhere I go. We got to visit the floor of the Grand Canyon during our New Years trip, and it was all I could think about the entire time.
In the past, I would have been much more focused on absorbing the colors and the sights, capturing forever in my memory the experience, being thankful that I have eyes that can see and legs that can carry me to places like this.
Don't get me wrong, I am truly grateful that I have had the opportunity to visit such an amazing sight. Since she left us, though, everything is different. My first thought at very turn is, "would she like this? Would she have wanted to do this with us?"
We will never know, though, what our little girl's preferences would have been, what she would like and dislike. What her favorite color would have been, or her favorite bedtime story, or her favorite bath toy.
I don't know what is more difficult for parents who have lost a child: losing them young enough that they have to wonder who they would have become, or losing them at an older age. One family I have been following tragically lost a daughter at 5 years old, and many of her favorite things bring back constant memories of her. Each circumstance is difficult and unique.
What further complicates the questions about Liza's preferences for me is the fact that she was born with Down syndrome. I haven't written yet about how we were prenatally diagnosed, which I will do someday. Suffice it to say that Luke and I knew our girl would come with a special extra chromosome in every cell of her body. About half of the individuals born with Down syndrome also have a congenital heart defect. Usually these are very operable, but in Liza's case, it was a more complicated defect, and in the end she did not survive the recovery after surgery. She passed away at just over seven weeks of age.
I don't know very many people with Down syndrome, but from talking with friends who are priveleged enough to have close family members with this condition, I know they don't always enjoy the same things as others might.
So on this trip, I was wondering, would Liza have liked the helicopter ride that brought us to the Grand Canyon floor? Would she have enjoyed the experience of being in these surroundings like her daddy and I did? Or maybe she would not have been comfortable in this environment, would not have found it fun, but rather scary or irritating. It's one of many questions to which we'll never know the answer.
In the meantime, I think of her wherever I am, wondering what it would be like if she were here. This poem has been on my heart today as I remember her, one day after the anniversary of her death, so I will close with these words.
Only Wanted You
They say memories are golden, well, maybe that is true.
I never wanted memories, I only wanted you.
A million times I cried.
If love alone could have saved you, you never would have died.
In life I loved you dearly, in death I love you still.
In my heart you hold a place no one else could fill.
If tears could build a stairway and heartache make a lane,
I'd walk the path to Heaven and bring you back again.
Our family chain is broken, and nothing seems the same.
But as God calls us back one by one, the chain will link again.
- Vicky Holder
Have a blessed year in 2012, everyone. Hold close those that you love and thank God every day for their lives. We don't know the number of days that each of us will have, and every moment we are granted together is precious.
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