Almost Three

Darth Vader, Dora, Dancing on Tables

No, Darth Vader and Dora are not dancing on tables at our house. But the way some of our days have gone recently, I wouldn't be surprised to see it. I was working on my computer the other morning and turned around to see this...



Here are a few other photos from this past week :)...

Darth Vader, Dora, Dancing on Tables

No, Darth Vader and Dora are not dancing on tables at our house. But the way some of our days have gone recently, I wouldn't be surprised to see it. I was working on my computer the other morning and turned around to see this...



Here are a few other photos from this past week :)...

Owning it

Life interrupted. That's how it feels when Down syndrome is diagnosed.

I have yet to find a parent who, as Nick expressed in the previous post, hasn't felt like the world fell away at the moment the diagnosis hit. I have yet to find a parent who hasn't felt grief, sadness, anger or fear in that moment--and in the aftershocks that follow, sometimes for years.

It is so normal to have these thoughts and feelings.

But we have to move on. At some point, we have to reach acceptance of ourselves, our children and our circumstances. There is no other choice, unless we want to wrestle with how things are for the rest of our lives.

Challenges force us to reflect and grow. As each day passes, we learn more and more about ourselves, our children, about life. It isn't always the first thing that comes to mind, but each day, each experience moves us further into the process of learning to trust--in ourselves, and in the inherent goodness of the world--and to know our own power and resilience.

Even though challenges are accompanied by discomfort--even pain--they help us develop grit and substance, and help us frame our continually evolving perspective on life. As much as the high points, the lows are inevitable and necessary. It is all part of the journey.

Having a serious health crisis myself just a few years before Bridget was born, I'd already come to terms with acceptance of circumstance. I don't wonder why? any more. I don't think why me? why us? why this? It just is. And I may never have complete answers. I have to be okay with that and move on.

I can't embrace my life--myself today and all of the people I love--if I can't see it as it is and accept it.

Still, there are times when I start to feel sad, overwhelmed or guilty. And I try to consciously recognize that it is me getting in the way of myself. It is me getting in the way of my own happiness.

I know that a person can't be positive or uplifting all the time. It's just not realistic. A person can, however keep an open heart and mind, and be willing to entertain--and embrace--new ideas, new experiences and new feelings. A person can be open to finding a new sense of normal and then finding the good within it.

People will always wonder "what if?": What if I had more children, fewer children, a job, a different job, family in town, family farther away, hadn't married so young, hadn't waited to get married, did more, did less...? Would it have made a difference?

Any time I start to compare Bridget to other kids, or our life to the lives of other families, I remind myself that we all have our issues. As a family, we have (and have had) some pretty big challenges. Trying to make a place in our lives for Down syndrome, especially when it came along as part and parcel of our youngest family member, is certainly not the biggest one.

When I look at Bridget--really look at her--it all falls back into place. Yes, it is still hard to make sense of some of the aspects of living life upside down, but something is so very right about her and who she is. She's so happy, so completely adored. She isn't thinking for a moment, "Gosh, I wish I was someone else".

Sometimes I wish I didn't have the extra layers of responsibility, but I don't wish I was someone else--or somewhere else--either. All of the people I love, what I feel, what I've experienced and learned...that's what makes me...me. I plan to own it.

Owning it

Life interrupted. That's how it feels when Down syndrome is diagnosed.

I have yet to find a parent who, as Nick expressed in the previous post, hasn't felt like the world fell away at the moment the diagnosis hit. I have yet to find a parent who hasn't felt grief, sadness, anger or fear in that moment--and in the aftershocks that follow, sometimes for years.

It is so normal to have these thoughts and feelings.

But we have to move on. At some point, we have to reach acceptance of ourselves, our children and our circumstances. There is no other choice, unless we want to wrestle with how things are for the rest of our lives.

Challenges force us to reflect and grow. As each day passes, we learn more and more about ourselves, our children, about life. It isn't always the first thing that comes to mind, but each day, each experience moves us further into the process of learning to trust--in ourselves, and in the inherent goodness of the world--and to know our own power and resilience.

Even though challenges are accompanied by discomfort--even pain--they help us develop grit and substance, and help us frame our continually evolving perspective on life. As much as the high points, the lows are inevitable and necessary. It is all part of the journey.

Having a serious health crisis myself just a few years before Bridget was born, I'd already come to terms with acceptance of circumstance. I don't wonder why? any more. I don't think why me? why us? why this? It just is. And I may never have complete answers. I have to be okay with that and move on.

I can't embrace my life--myself today and all of the people I love--if I can't see it as it is and accept it.

Still, there are times when I start to feel sad, overwhelmed or guilty. And I try to consciously recognize that it is me getting in the way of myself. It is me getting in the way of my own happiness.

I know that a person can't be positive or uplifting all the time. It's just not realistic. A person can, however keep an open heart and mind, and be willing to entertain--and embrace--new ideas, new experiences and new feelings. A person can be open to finding a new sense of normal and then finding the good within it.

People will always wonder "what if?": What if I had more children, fewer children, a job, a different job, family in town, family farther away, hadn't married so young, hadn't waited to get married, did more, did less...? Would it have made a difference?

Any time I start to compare Bridget to other kids, or our life to the lives of other families, I remind myself that we all have our issues. As a family, we have (and have had) some pretty big challenges. Trying to make a place in our lives for Down syndrome, especially when it came along as part and parcel of our youngest family member, is certainly not the biggest one.

When I look at Bridget--really look at her--it all falls back into place. Yes, it is still hard to make sense of some of the aspects of living life upside down, but something is so very right about her and who she is. She's so happy, so completely adored. She isn't thinking for a moment, "Gosh, I wish I was someone else".

Sometimes I wish I didn't have the extra layers of responsibility, but I don't wish I was someone else--or somewhere else--either. All of the people I love, what I feel, what I've experienced and learned...that's what makes me...me. I plan to own it.

Trisomy 21, Advocacy & Giving Thanks

The following was written by Nick McGivney, a father who lives in Ireland and blogs about his son Jacob (who has Ds). I learned about him through this post by Lito. Please visit Our Jacob and The Accidental Advocate to learn more about these dads and their unique perspectives.

THANKSGIVING AGAIN

Thank you so bloody much for picking on me.
Thanks for that first terrifying moment when I saw his different eyes and the world fell away.
Thanks for that cold, dislocated feeling when the doctor said the chromosome test confirms it.
Thanks for the anger and resentment.
Thanks a lot for picking on me.

Thanks for all the new words I’ve had to learn.
Thanks for the glory of meiotic nondisjunction events.
Thanks for the single palmar fold.
Thanks for trisomy, mosaicism, epicanthal folds, hypothyroid, hypotonia and arrhythmia.
Thanks for that extra wide gap between the big toe and the rest.
Thanks for a life that was complicated already, and now this?
Thanks for the unannounced bouts of embarrassment.
Thanks for pitying looks and well-meant overcompensation.

Thank you so much for picking on me.
Thanks for Significant Life-Threatening Events and Near Misses.
Thanks for beeping monitors and oxygen tubes and cluster care.
Thanks for apnoea and last Christmas, Lord.
Thanks for these fears for the future.
Thanks for this uncertainty of the present.
Thanks for red tape and robot-voiced bureaucracy.
Thanks for all those forms I love to fill.
Thank you indeed for picking on me.

But then thank you for January and that first smile.

Thank you for almost but not quite taking back the gift I didn’t know you’d given.
Thank you for that rush of blood that makes my heart thump louder.
Thank you for the knowledge that I will protect him with my every breath.
Thank you for the help, along some dark steps, from caring strangers more qualified than I.
Thank you for neighbours who don’t hesitate.
Thank you for trisomy and mosaicism and epicanthal folds.
Thanks for hypothyroid and hypotonia and arrhythmia.
Thanks for Significant Life-Threatening Events and Near Misses.
Thanks for beeping monitors and oxygen tubes and cluster care.
Thank you for the love that swells up inside to hurting when I look at him.
Thank you for each one of our wonderful, imperfect family.
Thank you for that very first smile.
Thank you for that very first smile.
Thank you for that very first smile.

Thank you for Jacob.

Thank you for picking me.

Trisomy 21, Advocacy & Giving Thanks

The following was written by Nick McGivney, a father who lives in Ireland and blogs about his son Jacob (who has Ds). I learned about him through this post by Lito. Please visit Our Jacob and The Accidental Advocate to learn more about these dads and their unique perspectives.

THANKSGIVING AGAIN

Thank you so bloody much for picking on me.
Thanks for that first terrifying moment when I saw his different eyes and the world fell away.
Thanks for that cold, dislocated feeling when the doctor said the chromosome test confirms it.
Thanks for the anger and resentment.
Thanks a lot for picking on me.

Thanks for all the new words I’ve had to learn.
Thanks for the glory of meiotic nondisjunction events.
Thanks for the single palmar fold.
Thanks for trisomy, mosaicism, epicanthal folds, hypothyroid, hypotonia and arrhythmia.
Thanks for that extra wide gap between the big toe and the rest.
Thanks for a life that was complicated already, and now this?
Thanks for the unannounced bouts of embarrassment.
Thanks for pitying looks and well-meant overcompensation.

Thank you so much for picking on me.
Thanks for Significant Life-Threatening Events and Near Misses.
Thanks for beeping monitors and oxygen tubes and cluster care.
Thanks for apnoea and last Christmas, Lord.
Thanks for these fears for the future.
Thanks for this uncertainty of the present.
Thanks for red tape and robot-voiced bureaucracy.
Thanks for all those forms I love to fill.
Thank you indeed for picking on me.

But then thank you for January and that first smile.

Thank you for almost but not quite taking back the gift I didn’t know you’d given.
Thank you for that rush of blood that makes my heart thump louder.
Thank you for the knowledge that I will protect him with my every breath.
Thank you for the help, along some dark steps, from caring strangers more qualified than I.
Thank you for neighbours who don’t hesitate.
Thank you for trisomy and mosaicism and epicanthal folds.
Thanks for hypothyroid and hypotonia and arrhythmia.
Thanks for Significant Life-Threatening Events and Near Misses.
Thanks for beeping monitors and oxygen tubes and cluster care.
Thank you for the love that swells up inside to hurting when I look at him.
Thank you for each one of our wonderful, imperfect family.
Thank you for that very first smile.
Thank you for that very first smile.
Thank you for that very first smile.

Thank you for Jacob.

Thank you for picking me.

The Mayor of Incredible Pizza

The kids always look forward to an evening at Incredible Pizza when we visit Grammy & Papa. The past few years, Bridget and I have stayed home while the rest of the group went because I thought it might be a little overwhelming for her.

This year, I was surprised that Bridget enjoyed not only the pizza and dessert buffet, but also the noisy game room (think Chuck E Cheese on steroids). Papa and I were on "Bridget duty". We were trying to keep her safe, so she was in a stroller most of the time, but she really wanted us to let her loose.

In the end, she got her wish and we let her push her own stroller/walk around for a few minutes before we left. She took off...and tried to get in line for the Go-Karts. She stopped only to greet people in her path. Another toddler. An older woman. A young man with tattoos.

One by one, each of them stopped to talk to her. She reached out. I pulled her back and started to say, "I'm sorry. It's time to go, sweetie...". But she gave them each a hug before she was on her way again.

I had tried to hurry her, for so many reasons. But no one else wanted to rush her off. One-by-one, each of the innocent by-standers stood, smiling, waiting for Bridget to be the one to say goodbye. They seemed genuinely surprised, and happy, to be noticed.

The older woman, with tears in her eyes, bent down and said to Bridget, "Honey, you'll never know a stranger." She turned to me. "Your little girl just made my day."

In the midst of all the chaos and flashing lights and noise, Bridget (her tiny little self) made people stop. And smile. And feel special. She has a way of doing just that. And I love that about her...

The Mayor of Incredible Pizza

The kids always look forward to an evening at Incredible Pizza when we visit Grammy & Papa. The past few years, Bridget and I have stayed home while the rest of the group went because I thought it might be a little overwhelming for her.

This year, I was surprised that Bridget enjoyed not only the pizza and dessert buffet, but also the noisy game room (think Chuck E Cheese on steroids). Papa and I were on "Bridget duty". We were trying to keep her safe, so she was in a stroller most of the time, but she really wanted us to let her loose.

In the end, she got her wish and we let her push her own stroller/walk around for a few minutes before we left. She took off...and tried to get in line for the Go-Karts. She stopped only to greet people in her path. Another toddler. An older woman. A young man with tattoos.

One by one, each of them stopped to talk to her. She reached out. I pulled her back and started to say, "I'm sorry. It's time to go, sweetie...". But she gave them each a hug before she was on her way again.

I had tried to hurry her, for so many reasons. But no one else wanted to rush her off. One-by-one, each of the innocent by-standers stood, smiling, waiting for Bridget to be the one to say goodbye. They seemed genuinely surprised, and happy, to be noticed.

The older woman, with tears in her eyes, bent down and said to Bridget, "Honey, you'll never know a stranger." She turned to me. "Your little girl just made my day."

In the midst of all the chaos and flashing lights and noise, Bridget (her tiny little self) made people stop. And smile. And feel special. She has a way of doing just that. And I love that about her...

Gifts 2 Due Out in September

Exciting news...

Gifts 2 is now available for pre-order (through publisher Woodbine House and also through Amazon) and is expected to be released in September, just in time for Down Syndrome Awareness Month.

I haven't mentioned it yet here, but a story I wrote about Miss Bridget will be included in the collection.

I've read many of the other stories already, and am thrilled to be part of this project.

Gifts meant so much to me when Bridget was little. It offered a glimpse into our future and helped me see how other families who were farther along in the journey were thriving or had been able to make sense of it all and head forward with hope and gratitude. It offered our friends and family a sense of comfort for the same reasons. Gifts was truly a gift in itself.

This second volume is a strong follow-up to the first. Go pre-order yourself a copy. Or two. Or three :).


From the publisher:

Acceptance, courage, friendship, awareness, and joy--these are the gifts recounted in more than seventy inspirational essays included in Gifts 2. Edited by Kathryn Lynard Soper, the follow-up to the bestselling Gifts presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

Like the previous book, Gifts 2 helps us see that the hopes and dreams family and friends have for a child with Down syndrome are similar to the ones we have for any child. And, more often than not, expectations are fulfilled--if not always the way we anticipated they would be. A grandparent, inspired by his grandson's strong will, discovers the ability to persevere and not give up on a job. A brother who assumed he would be the person helping his sibling with Down syndrome describes how often it is the other way around. A young teacher remembers her first student with Down syndrome and it gives her strength and clarity when she is faced with her own child's diagnosis.

This heartfelt collection is a source of comfort to other families, and offers insight to anyone who wonders how people with Down syndrome live today. Give the ultimate gift, share both volumes with family and friends, your child's teacher or pediatrician--help raise public awareness and provide others a point-of-view they might otherwise miss.

Gifts 2 Due Out in September

Exciting news...

Gifts 2 is now available for pre-order (through publisher Woodbine House and also through Amazon) and is expected to be released in September, just in time for Down Syndrome Awareness Month.

I haven't mentioned it yet here, but a story I wrote about Miss Bridget will be included in the collection.

I've read many of the other stories already, and am thrilled to be part of this project.

Gifts meant so much to me when Bridget was little. It offered a glimpse into our future and helped me see how other families who were farther along in the journey were thriving or had been able to make sense of it all and head forward with hope and gratitude. It offered our friends and family a sense of comfort for the same reasons. Gifts was truly a gift in itself.

This second volume is a strong follow-up to the first. Go pre-order yourself a copy. Or two. Or three :).


From the publisher:

Acceptance, courage, friendship, awareness, and joy--these are the gifts recounted in more than seventy inspirational essays included in Gifts 2. Edited by Kathryn Lynard Soper, the follow-up to the bestselling Gifts presents a broader perspective on Down syndrome and life by including passionate stories by siblings, grandparents, cousins, aunts and uncles, as well as mothers of older children. Friends, teachers, medical professionals, and coaches also share the joys of knowing and caring for someone with Down syndrome.

Like the previous book, Gifts 2 helps us see that the hopes and dreams family and friends have for a child with Down syndrome are similar to the ones we have for any child. And, more often than not, expectations are fulfilled--if not always the way we anticipated they would be. A grandparent, inspired by his grandson's strong will, discovers the ability to persevere and not give up on a job. A brother who assumed he would be the person helping his sibling with Down syndrome describes how often it is the other way around. A young teacher remembers her first student with Down syndrome and it gives her strength and clarity when she is faced with her own child's diagnosis.

This heartfelt collection is a source of comfort to other families, and offers insight to anyone who wonders how people with Down syndrome live today. Give the ultimate gift, share both volumes with family and friends, your child's teacher or pediatrician--help raise public awareness and provide others a point-of-view they might otherwise miss.

Back with a Bang

We've just returned home from a wonderful week in Missouri with my brother's family visiting my parents, "Ma Bop" & "Pa Pop" as Bridget calls them, or Grammy and Papa to the rest of us.

With beautiful weather and lots of time to talk, laugh, and play, it was a perfect break from the details of everyday life.

Bridget was in her element. She was the center of attention and enjoyed by all. Here are a few photos from our trip:































































We're just a few weeks away from Bridget's third birthday, and I have lots of posts in the cue. I've been doing some reading, thinking and planning, as well as general reflecting on life with Bridget. If you're interested, check back often between now and the end of the month for new posts (thoughts on early intervention/therapy, transitioning to the school system, celebrating Bridget). There's so much to say...

Back with a Bang

We've just returned home from a wonderful week in Missouri with my brother's family visiting my parents, "Ma Bop" & "Pa Pop" as Bridget calls them, or Grammy and Papa to the rest of us.

With beautiful weather and lots of time to talk, laugh, and play, it was a perfect break from the details of everyday life.

Bridget was in her element. She was the center of attention and enjoyed by all. Here are a few photos from our trip:































































We're just a few weeks away from Bridget's third birthday, and I have lots of posts in the cue. I've been doing some reading, thinking and planning, as well as general reflecting on life with Bridget. If you're interested, check back often between now and the end of the month for new posts (thoughts on early intervention/therapy, transitioning to the school system, celebrating Bridget). There's so much to say...

I'm on Patrol...Anyone Want to Join Me?

I'm joining the Oz Squad, a new internet watchdog/group of bloggers who advocate for people with Down syndrome. Our main goal is to educate--to provide support and up-to-date information--as well as to share real-life experiences about Down syndrome.

People with Down syndrome have immeasurable worth and should be treated with respect, so we're taking a stand whenever we read something on-line that is cruel, insensitive or inaccurate about people with Ds or other developmental delays. Want to help? Contact our captain, Dan...

I'm on Patrol...Anyone Want to Join Me?

I'm joining the Oz Squad, a new internet watchdog/group of bloggers who advocate for people with Down syndrome. Our main goal is to educate--to provide support and up-to-date information--as well as to share real-life experiences about Down syndrome.

People with Down syndrome have immeasurable worth and should be treated with respect, so we're taking a stand whenever we read something on-line that is cruel, insensitive or inaccurate about people with Ds or other developmental delays. Want to help? Contact our captain, Dan...

A Blog Pause

...to enjoy family, fireworks and fireflies. I'll have lots of pictures and stories to share soon, so stay tuned. Thanks to everyone who continues to read and respond. Happy 4th of July!

A Blog Pause

...to enjoy family, fireworks and fireflies. I'll have lots of pictures and stories to share soon, so stay tuned. Thanks to everyone who continues to read and respond. Happy 4th of July!