A Look Back: Starting Solids

Wow, these pictures bring back memories! I was nervous and excited to try solids with Bridget.

We gave her oatmeal cereal when she was about six months old. We then moved to apples and sweet potatoes within a few weeks. We used the small maroon spoons for her first year, and they were perfect.

Bridget did very well with stage one baby foods, cereal and yogurt (she had more trouble with crunchy and chewy textures--which I will cover in a future post--as she was not moving food from the sides of her mouth to "chew" with her gums...she had no teeth until she was 16 months old!).

I also cooked and pureed all kinds of squash, berries and other fruits and veggies as well as a wide variety of soups. We started giving her yogurt when she was about eight months old--Stoneyfield Farm O'Soy because I thought she might have a milk intolerance. (She still drinks soy milk today, although I have switched her over to regular, organic yogurt.)

Bridget has always eaten a wide variety of healthy foods. She has a great appetite and has never been picky about temperature or flavor, although she prefers seasoned or spicy foods. She has always done fine with different textures as well, although she did not like finding chunks of peaches in her yogurt and would growl when she got one :).

We moved from pureed baby foods to soft diced foods like banana and avocado, which she was able to finger-feed herself by the time she was about a year old.

Although we've had to take some extra steps to provide Bridget with a safe and nutritious diet, Bridget is absolutely worth it. I am happy to answer specific questions, so fire away if you have any!

Learning to Eat, Continued

In the months just after Bridget was born--when she still needed her milk to be thickened--I was able to express my milk and then safely let her "practice" nursing. We did this every day, at least once. She was almost always willing to try, and apparently got just enough hindmilk to keep her interested. Anyone who has been through continual pumping knows how much work it takes. It is truly a labor or love. Then again, so is attempting breastfeeding after months and months of bottle feeding (especially when you've been told your baby most likely will not be able to nurse effectively). I had a strong feeling that Bridget would be able to get the hang of it, though I couldn't imagine what it would be like to actually get to nurse her.

Once she was cleared for thin liquids, I began to transition her to breastfeeding by nursing once a day to start. Within a few days, she was nursing for all but her morning feeding (when she was the least sleepy and most hungry!). After about a week, she was nursing every feeding. It took some getting used to for both of us. Positioning was key, as were listening for her swallows and taking her off during let-down. After about a week, we were "working" less and feeding time became truly enjoyable. Within two weeks, there were no issues at all and she was nursing like a pro.

From my journal of Bridget's first year:

Life just got so much easier!

I can't believe Bridget is nursing! I was trying not to get my hopes up in case it didn't work out, but I have been waiting for this day since she arrived. I am overcome with emotion every single time I feed her.

Today the light was streaming through the window into our bedroom as I was feeding her, looking at her beautiful, sweet face and holding her little hand. (Bridget always holds my hand or shirt when she's eating). She is my chubby, gentle, sweet angel. Sometimes I can't believe she is ours. I wouldn't want to be anywhere else in the world than where I am right now.

I took the last picture in yesterday's post the same day I wrote this entry. I wanted to always remember the sweetness and joy of that moment. It still makes me teary-eyed.

More on starting solids tomorrow...

A Look Back: Learning to Eat

We spent nearly a month at Children’s Hospital with Bridget, and those first few weeks were both exhilarating and exhausting. She recovered from her surgery quickly, and was ready to begin tube feedings within a few days later.

As is typical in a NICU setting, Chris and I had no input on “the plan” for Bridget’s recovery. But, as soon as I was able to spend time with her, my mothering instincts took over, and all I wanted to do was take care of her and protect her.

I noticed right away that she would turn her head toward me when she heard my voice, and that she would start rooting every two hours just like all of our other kids did as babies, only I wasn’t allowed to feed her (or even hold her at first).

The plan for her recovery was measured and prescribed according to stringent standards, for her safety and best interest. And while I understood that, I couldn't wait for the time to come when she had recovered enough so I could step in and take over for the doctors, nurses and machines.

Bridget began getting my milk through a tube in her nose about 5 days after her surgery. She tolerated that well, so she was given a bottle 2 days later. She made a few strange, high-pitched noises the first couple of times she ate by mouth, and while she started off vigorously, she tired after about 10 minutes. A video swallow study was ordered, which showed that she was aspirating slightly while she was eating. That’s why she would “shut down” after a certain period of time. She was trying to keep herself safe. We were asked to thicken her feeds with a clear, non-nutritive gel.

I had to express my milk, thicken it, and then feed it to her in a bottle. Essentially, the milk was so thick that it was like “sucking pudding through a straw,” as one therapist put it. She could not finish a whole bottle (one and a half ounces) in 30 minutes or less. Still, she had a strong desire to eat. We asked for more time for her to try to learn to feed by mouth, since she was showing so many positive signs.

“These kids,” one surgeon explained, “tend not to do well with feeding by mouth.” He felt strongly that she would either go home on a feeding tube, or would be back to get one at some point. After attempting only a few bottles, he asked our permission to “pop a G-tube in her, and get her home”.

To leave the hospital without a tube, he said, she needed not only to take full feedings by mouth, but also to prove she could gain weight doing it. He was concerned that she would expend too much energy eating, and would not be able to gain weight even if she could take the full amount at all feedings by mouth (which he also felt was highly unlikely). I don’t know that he ever really considered her, though. “This kid” clearly has the desire to eat, I thought, and I have no reason to assume that she doesn’t have the ability. At the very least, she deserves the chance to learn to eat.

So I learned early on that I would need to fight for Bridget—just as I’d do for any of my other children—only that there would likely be more circumstances when she’d need my advocacy.

At the time of this conversation with the surgeon, Bridget was just barely 36 weeks (gestational age) and had only been given bottles to try a few times. In addition to having Down syndrome, she was a preemie recovering from surgery, but she sucked like crazy on her pacifier and was rooting everywhere when she was near me or heard my voice. She was waking, hungry, every two and a half hours. If I was nursing her, I would have been feeding her on-demand. This kid wanted to eat.

We bought enough time in the monitored hospital environment that we were able to have the swallow study repeated. The second test showed that her swallow had continued to develop, and that she was able to safely handle liquid that was only slightly thickened. That, combined with the fact that she reached 37 weeks (gestational age), must have made a huge difference. She was waking for every feed and quickly began taking the full bottle every time it was offered to her. Still, she was limited in not only when she could take food by mouth, but in how much she could take. Working up to all feeds by mouth was a deliberate, gradual process.

I spent nearly two weeks around the clock at the hospital with Bridget working on feeding. There were times that our doctors insisted we feed Bridget through a tube in her nose, rather than by mouth, to conserve her energy. It made sense to some degree, but I watched her rooting while the nurse poured my milk into her feeding tube. Her instincts were strong and in tact, and it was very difficult for me to stand by and watch, when I should have been nursing her on demand, and at home.

When I was able to feed her by bottle, I often cried. I knew she was giving it everything she had. I could tell that she was working so hard to remember suck-swallow-breathe, suck-swallow-breathe. It must have been demanding on her little body to have to put forth so much energy to get the thickened milk out of the bottle. But, her effort was strong and her determination was clear. She was doing her part…

Sometimes (and usually multiple times within a feeding) she would fall asleep eating and would seem like she was completely done trying. I’d give her a few minutes and then try her again. With her eyes still closed, she would begin sucking like crazy. When she would slow to the point that I thought she would give up, I would rub her arm or cheeks and whisper to her, “You can do it. Just one more try.” With her eyes still closed and arms at her sides, she would vigorously begin again. It was endearing and hilarious at the same time. Just when you thought her effort was fading, she would pop back up and give it another try. She just blew me away.

One night we had a nurse with an accent so thick that I could hardly understand anything she said. This nurse was very attentive, and came in to wake me when it was time for Bridget’s feedings. She brought in each tiny bottle and stood quietly for a few minutes to watch. Bridget would start out great guns, and then gradually slow down and nearly stop. I had to coax her to keep at it, but I knew that every bottle we did not finish meant that we were either going to have to stay longer, or we were getting closer to that G-tube. Honestly, I would have done whatever was best for Bridget, but deep down I knew she was nearly ready to come home without a feeding tube. The nurse would leave and return about 20 minutes later. Each time, the bottle was nearly full when she left, and gone when she returned. Her smile got bigger and bigger with each feeding. She was clearly moved by our success. In the morning as her shift ended, she came into the room, leaned down beside me, touched my arm and said clearly and with great sincerity, “I think she felt in her heart…your wish for her.” I know she did... Bridget was able to leave the hospital just days later without medications, monitors, or tubes of any kind.

I expressed milk for Bridget for nearly five months, until she was cleared for thin liquids, when I began nursing her exclusively. The transition was a smooth one. After about a week, it seemed like she'd always been a breast-fed baby. I nursed her until she was 18 months old.

More on that--and on beginning solids--tomorrow.

A Look Back: Learning to Eat

We spent nearly a month at Children’s Hospital with Bridget, and those first few weeks were both exhilarating and exhausting. She recovered from her surgery quickly, and was ready to begin tube feedings within a few days later.

As is typical in a NICU setting, Chris and I had no input on “the plan” for Bridget’s recovery. But, as soon as I was able to spend time with her, my mothering instincts took over, and all I wanted to do was take care of her and protect her.

I noticed right away that she would turn her head toward me when she heard my voice, and that she would start rooting every two hours just like all of our other kids did as babies, only I wasn’t allowed to feed her (or even hold her at first).

The plan for her recovery was measured and prescribed according to stringent standards, for her safety and best interest. And while I understood that, I couldn't wait for the time to come when she had recovered enough so I could step in and take over for the doctors, nurses and machines.

Bridget began getting my milk through a tube in her nose about 5 days after her surgery. She tolerated that well, so she was given a bottle 2 days later. She made a few strange, high-pitched noises the first couple of times she ate by mouth, and while she started off vigorously, she tired after about 10 minutes. A video swallow study was ordered, which showed that she was aspirating slightly while she was eating. That’s why she would “shut down” after a certain period of time. She was trying to keep herself safe. We were asked to thicken her feeds with a clear, non-nutritive gel.

I had to express my milk, thicken it, and then feed it to her in a bottle. Essentially, the milk was so thick that it was like “sucking pudding through a straw,” as one therapist put it. She could not finish a whole bottle (one and a half ounces) in 30 minutes or less. Still, she had a strong desire to eat. We asked for more time for her to try to learn to feed by mouth, since she was showing so many positive signs.

“These kids,” one surgeon explained, “tend not to do well with feeding by mouth.” He felt strongly that she would either go home on a feeding tube, or would be back to get one at some point. After attempting only a few bottles, he asked our permission to “pop a G-tube in her, and get her home”.

To leave the hospital without a tube, he said, she needed not only to take full feedings by mouth, but also to prove she could gain weight doing it. He was concerned that she would expend too much energy eating, and would not be able to gain weight even if she could take the full amount at all feedings by mouth (which he also felt was highly unlikely). I don’t know that he ever really considered her, though. “This kid” clearly has the desire to eat, I thought, and I have no reason to assume that she doesn’t have the ability. At the very least, she deserves the chance to learn to eat.

So I learned early on that I would need to fight for Bridget—just as I’d do for any of my other children—only that there would likely be more circumstances when she’d need my advocacy.

At the time of this conversation with the surgeon, Bridget was just barely 36 weeks (gestational age) and had only been given bottles to try a few times. In addition to having Down syndrome, she was a preemie recovering from surgery, but she sucked like crazy on her pacifier and was rooting everywhere when she was near me or heard my voice. She was waking, hungry, every two and a half hours. If I was nursing her, I would have been feeding her on-demand. This kid wanted to eat.

We bought enough time in the monitored hospital environment that we were able to have the swallow study repeated. The second test showed that her swallow had continued to develop, and that she was able to safely handle liquid that was only slightly thickened. That, combined with the fact that she reached 37 weeks (gestational age), must have made a huge difference. She was waking for every feed and quickly began taking the full bottle every time it was offered to her. Still, she was limited in not only when she could take food by mouth, but in how much she could take. Working up to all feeds by mouth was a deliberate, gradual process.

I spent nearly two weeks around the clock at the hospital with Bridget working on feeding. There were times that our doctors insisted we feed Bridget through a tube in her nose, rather than by mouth, to conserve her energy. It made sense to some degree, but I watched her rooting while the nurse poured my milk into her feeding tube. Her instincts were strong and in tact, and it was very difficult for me to stand by and watch, when I should have been nursing her on demand, and at home.

When I was able to feed her by bottle, I often cried. I knew she was giving it everything she had. I could tell that she was working so hard to remember suck-swallow-breathe, suck-swallow-breathe. It must have been demanding on her little body to have to put forth so much energy to get the thickened milk out of the bottle. But, her effort was strong and her determination was clear. She was doing her part…

Sometimes (and usually multiple times within a feeding) she would fall asleep eating and would seem like she was completely done trying. I’d give her a few minutes and then try her again. With her eyes still closed, she would begin sucking like crazy. When she would slow to the point that I thought she would give up, I would rub her arm or cheeks and whisper to her, “You can do it. Just one more try.” With her eyes still closed and arms at her sides, she would vigorously begin again. It was endearing and hilarious at the same time. Just when you thought her effort was fading, she would pop back up and give it another try. She just blew me away.

One night we had a nurse with an accent so thick that I could hardly understand anything she said. This nurse was very attentive, and came in to wake me when it was time for Bridget’s feedings. She brought in each tiny bottle and stood quietly for a few minutes to watch. Bridget would start out great guns, and then gradually slow down and nearly stop. I had to coax her to keep at it, but I knew that every bottle we did not finish meant that we were either going to have to stay longer, or we were getting closer to that G-tube. Honestly, I would have done whatever was best for Bridget, but deep down I knew she was nearly ready to come home without a feeding tube. The nurse would leave and return about 20 minutes later. Each time, the bottle was nearly full when she left, and gone when she returned. Her smile got bigger and bigger with each feeding. She was clearly moved by our success. In the morning as her shift ended, she came into the room, leaned down beside me, touched my arm and said clearly and with great sincerity, “I think she felt in her heart…your wish for her.” I know she did... Bridget was able to leave the hospital just days later without medications, monitors, or tubes of any kind.

I expressed milk for Bridget for nearly five months, until she was cleared for thin liquids, when I began nursing her exclusively. The transition was a smooth one. After about a week, it seemed like she'd always been a breast-fed baby. I nursed her until she was 18 months old.

More on that--and on beginning solids--tomorrow.

Oral-Motor Issues in Kids with Down Syndrome

When Bridget was born and diagnosed with Down syndrome, Chris and I wondered how raising her would be different than parenting our other kids.

Like most other parents of children with Ds, as we learned about the condition, we heard about the challenges that often come with a diagnosis of Down syndrome. We had to sort through the many health and developmental issues that are common in people with Ds and figure out what applied to Bridget, and therefore to us.

People with Down syndrome have a wide variety of skills and challenges, just like anyone else. Yes, there are some issues that are more common in people with Ds, but no two people with Ds are exactly alike. And while it is true that there is no such thing as a mild case of Down syndrome (you either have it or you don't), it is also true that some people with Ds have greater challenges than others.

I'm not an expert, but it seems like children with major medical issues are often more delayed in reaching milestones than kids who do not have health challenges (any child, not just kids with Ds). Kids with Down syndrome who also have major health challenges are often significantly delayed in reaching milestones of all kinds. Though once those health issues resolve (after heart surgery, for example, or after vision and hearing issues are addressed), the child often begins to make up for lost time and begins to "catch up".

Bridget has always been very healthy. She had a very small atrial septal defect (ASD), but it did not cause problems for her and had closed by the time she turned one year old.

She had surgery the day she was born (to correct a relatively minor abdominal wall malformation) and was born prematurely (at 34 weeks). She recovered quickly from the surgery, but was still having occasional "Brady's"--brief episodes when her heart rate would drop--a common issue in preemies. And, as soon as she was able to begin eating by mouth (when she was about a week old), it became clear to us that her swallow was not fully developed. She stayed in the hospital for nearly a month, where she could be in a safe, monitored environment until the random dropping heart-rates resolved and swallowing issues improved.

Helping Bridget learn to eat by mouth was our first major challenge, and over time we learned that feeding issues would be one of our two biggest hurdles in the first several years of life with Bridget. A related oral-motor skill, speech, would prove to be the other.

Since feeding and speech concerns are often related, and are both common in kids with Down syndrome, my next several posts will cover these issues in depth.

Speech-Language Pathologist Sara Rosenfeld Johnson's blog, Sara's Feeding and Speech Thoughts, is a great resource for parents looking for information on these topics.

More tomorrow...

Seeing the Possiblity in Bridget

When Bridget was unexpectedly born with Down syndrome, we were unsure of what that meant both for her, and for us. We had no real-life point of reference.

Despite an increase in public discourse and media attention in the past few years, Down syndrome itself is still largely misunderstood by the general public. Most people do not have an accurate idea of what it is like to raise a child with Ds today. Early intervention, improved health screenings and treatments, inclusion in mainstream classrooms and in society—along with a greater understanding of the potential and worth of individuals with Ds—have contributed to a better life and brighter future for those with Ds. Yet misconceptions and inaccuracies abound not only within our schools and neighborhoods, but also within the medical community.

I am committed to getting accurate information and our real-life experience out there circulating in the world outside our home. I want others to know all that Bridget is and all she has brought to our lives.

It seems like common sense, but apparently it is not: expectant parents deserve up-to-date, unbiased and balanced information about the condition (delivered in a considerate manner), although many are still offered inaccurate information which paints a dim picture of the life and potential of people with Ds. (People are shocked to hear of the incredibly high termination rates of Down syndrome pregnancies--estimated between 90-95% of those prenatally diagnosed--but it seems that many expectant parents are making choices based on limited information and stereotypes which unfairly highlight potential challenges in the life of a person with Down syndrome rather than highlighting the potential in the person.)

Reading about Down syndrome or learning about the condition in the absence of a person with the diagnosis is not seeing the whole picture. When Bridget was born, we knew very little about Down syndrome. We were initially told many things that may be true for some people with Ds, but are not the reality for us. Now Bridget is the one doing the teaching. And we are listening...closely.

***

We have learned so much from Bridget in these past three years. The following is taken from an article I wrote for our local board of developmental disabilities:

Seeing the Possibility in Bridget

Three years ago, our family was sitting in a hospital room with heavy hearts, looking at a beautiful little girl in a tiny bed and wondering what challenges she would face.

When Bridget was a newborn, we learned about Down syndrome through what we read or were told by others. As Bridget has grown, she’s shown us all far more about herself—as well as Down syndrome, and what it’s like to live with a disability—than any textbook or person could have.

Bridget does not see herself as challenged. She is just a kid—being and doing. Like everyone else, Bridget has her own set of skills and challenges. Like everyone else, she is also full of dimension and potential.

Today, Bridget is a happy, healthy and secure three-year-old who continues to reach milestones on her own terms. She’s growing, learning new things, making friends and developing and a strong sense of herself. She is taking her first steps toward independence.

A few weeks ago, I helped Bridget climb up the stairs onto a school bus for her first day of preschool in our local school system. She is thriving.

Bridget is aware and energetic, with the whole world ahead of her. And although we are excited to see what’s in store for Bridget, we are not in a hurry to see where she’s going or even how she will get there. With a little extra support, she’ll make her way. And we will enjoy the journey right along with her.

Bridget is opening hearts and minds daily. She's showing others that all people have abilities, and that our human value is not based on our achievements.

We realize that we won’t know all of Bridget’s capabilities unless we give her the chance to learn, to build relationships, to be part of the community and to live her own life in her own unique way.

A friend once said that when you’ve see the light in someone the world may reject—a person who doesn’t fit the mold of what society says is perfect, successful or beautiful—then you begin to see that light everywhere. We understand that clearly now.

Bridget is interesting and funny and talented, all in her own right. She deserves the chance to make her own way in this world.

We’ve learned to never underestimate Bridget. What we know now is that she is not only capable of far more than most people would think, but also that she is a joyful, important, contributing member of our family and of the community who makes life brighter for all of us.

Given encouragement and opportunity, the world is full of possibilities for Bridget--and for the rest of us.

Seeing the Possiblity in Bridget

When Bridget was unexpectedly born with Down syndrome, we were unsure of what that meant both for her, and for us. We had no real-life point of reference.

Despite an increase in public discourse and media attention in the past few years, Down syndrome itself is still largely misunderstood by the general public. Most people do not have an accurate idea of what it is like to raise a child with Ds today. Early intervention, improved health screenings and treatments, inclusion in mainstream classrooms and in society—along with a greater understanding of the potential and worth of individuals with Ds—have contributed to a better life and brighter future for those with Ds. Yet misconceptions and inaccuracies abound not only within our schools and neighborhoods, but also within the medical community.

I am committed to getting accurate information and our real-life experience out there circulating in the world outside our home. I want others to know all that Bridget is and all she has brought to our lives.

It seems like common sense, but apparently it is not: expectant parents deserve up-to-date, unbiased and balanced information about the condition (delivered in a considerate manner), although many are still offered inaccurate information which paints a dim picture of the life and potential of people with Ds. (People are shocked to hear of the incredibly high termination rates of Down syndrome pregnancies--estimated between 90-95% of those prenatally diagnosed--but it seems that many expectant parents are making choices based on limited information and stereotypes which unfairly highlight potential challenges in the life of a person with Down syndrome rather than highlighting the potential in the person.)

Reading about Down syndrome or learning about the condition in the absence of a person with the diagnosis is not seeing the whole picture. When Bridget was born, we knew very little about Down syndrome. We were initially told many things that may be true for some people with Ds, but are not the reality for us. Now Bridget is the one doing the teaching. And we are listening...closely.

***

We have learned so much from Bridget in these past three years. The following is taken from an article I wrote for our local board of developmental disabilities:

Seeing the Possibility in Bridget

Three years ago, our family was sitting in a hospital room with heavy hearts, looking at a beautiful little girl in a tiny bed and wondering what challenges she would face.

When Bridget was a newborn, we learned about Down syndrome through what we read or were told by others. As Bridget has grown, she’s shown us all far more about herself—as well as Down syndrome, and what it’s like to live with a disability—than any textbook or person could have.

Bridget does not see herself as challenged. She is just a kid—being and doing. Like everyone else, Bridget has her own set of skills and challenges. Like everyone else, she is also full of dimension and potential.

Today, Bridget is a happy, healthy and secure three-year-old who continues to reach milestones on her own terms. She’s growing, learning new things, making friends and developing and a strong sense of herself. She is taking her first steps toward independence.

A few weeks ago, I helped Bridget climb up the stairs onto a school bus for her first day of preschool in our local school system. She is thriving.

Bridget is aware and energetic, with the whole world ahead of her. And although we are excited to see what’s in store for Bridget, we are not in a hurry to see where she’s going or even how she will get there. With a little extra support, she’ll make her way. And we will enjoy the journey right along with her.

Bridget is opening hearts and minds daily. She's showing others that all people have abilities, and that our human value is not based on our achievements.

We realize that we won’t know all of Bridget’s capabilities unless we give her the chance to learn, to build relationships, to be part of the community and to live her own life in her own unique way.

A friend once said that when you’ve see the light in someone the world may reject—a person who doesn’t fit the mold of what society says is perfect, successful or beautiful—then you begin to see that light everywhere. We understand that clearly now.

Bridget is interesting and funny and talented, all in her own right. She deserves the chance to make her own way in this world.

We’ve learned to never underestimate Bridget. What we know now is that she is not only capable of far more than most people would think, but also that she is a joyful, important, contributing member of our family and of the community who makes life brighter for all of us.

Given encouragement and opportunity, the world is full of possibilities for Bridget--and for the rest of us.

Precious Baby Bridget

~A look back to over three years ago~

Look at this little pumpkin! We'd been home from the hospital for just a few weeks when I snapped this photo. Bridget was five pounds when she was born, but was already starting to put on some weight. When I see this picture, I realize that I am falling in love all over again. I also realize what my youngest daughter has been trying to tell me all along: "Mom, I am going to be okay!" Today, when Bridget coughs or trips, she shouts, "OH KAY!" She's started to anticipate me asking, "Are you okay?" (which I do every. single. time. she coughs, trips, clears her throat, etc.). When she was tiny, I worried about her health, how much she was eating, what she was hearing, seeing, learning. At every turn, she reassured me. I just needed to listen a little more closely...

Precious Baby Bridget

~A look back to over three years ago~

Look at this little pumpkin! We'd been home from the hospital for just a few weeks when I snapped this photo. Bridget was five pounds when she was born, but was already starting to put on some weight. When I see this picture, I realize that I am falling in love all over again. I also realize what my youngest daughter has been trying to tell me all along: "Mom, I am going to be okay!" Today, when Bridget coughs or trips, she shouts, "OH KAY!" She's started to anticipate me asking, "Are you okay?" (which I do every. single. time. she coughs, trips, clears her throat, etc.). When she was tiny, I worried about her health, how much she was eating, what she was hearing, seeing, learning. At every turn, she reassured me. I just needed to listen a little more closely...

Family Picture Part II, The Unfolding

In the early days with Bridget, my mind never stopped racing. I talked to doctors, ate and slept with my mind clicking along. I was constantly thinking about what life was going to be like once we brought Bridget home and how I was going to manage. I'd thought baby #5 was going to be a breeze. Mmm, slight change in plans.

If you've seen our blog or website before, you already know that I had a pretty strong feeling while I was pregnant that Bridget had Down syndrome. I did not, however, go there...except in my mind. Being a planning-type, you'd think I would have learned all sorts of things to prepare, just in case my intuition was right.

But I'm also a realist, and we had no definitive information that she was anything other than a perfectly "healthy" baby. The odds were heavily in our favor for just that. So I made the decision to keep my hunch to myself, and to hope like you-know-what that I was wrong.

I had no idea what a life with Down syndrome meant. Of all the things we envision and want for our children, Down syndrome is not usually on the list. In my last post, I mentioned some of the things I thought about when I looked at the Christmas picture of the kids and tried to imagine our new baby in the mix.

When our ultrasound revealed that we were expecting a little girl, my thoughts shifted to things like room-sharing, hand-me-downs, dance recitals (or maybe soccer games), prom dresses, driving, boyfriends, college, more shoes, another wedding.

And all that is a huge part of my stumbling when Bridget was new. Was life going to be vastly different than what we'd anticipated? How would Ds affect Bridget's life, and our lives? I just couldn't get my mind around what it actually meant for any of us.

Knowing that we don't always get to choose our paths, Chris and I quickly accepted Bridget's diagnosis. We know we have to play the hand we're dealt, whether we asked for it or not.

Many times in those first few weeks, we discussed how deeply we already loved Bridget, and that we'd learn whatever we needed to learn, do whatever it took to be the best parents and advocates we could be for her. Our daily trips to the hospital did more than keep Tim Horton's in business--during our car rides together, we also solved a few of life's greatest mysteries...well, at least in part.

In one of our deeper discussions, we decided that we really don't know what the future holds for any of us, and that the things we envisioned may or may not be part of any of our children's lives--and we'd have to be okay with that.

We also came to realize that any sense of sadness or loss at that point had more to do with us, and the loss of a future that never really existed (what we anticipated, what's typical), than with Bridget.

We decided we'd have to wait for the unfolding of Bridget and her life--for her to grow and become and write her own story--before we knew how it would all play out. We had every reason to think we'd be as awed by her as we are by each of our other children. It is an incredible privilege to see a person grow and become--to see a person unfold.

There were many times in those first few weeks that I felt proud, confident and strong. At other times I slipped far out of my comfort zone, feeling vulnerable, very tired and a little scared. There's so much to learn, I kept thinking. How am I going to advocate for Bridget when I'm still not sure what her having Down syndrome really means?

My head would fill with questions and images of some of the things we'd read or had been told, and I struggled to tell myself that we would find a way to be okay, that Bridget would be okay. I didn't know that for sure, but it is what I wanted to believe. I wanted to have hope.

Bridget was in the hospital for one month. She gained weight, and strength, and showed time and again her strong will and determination. Over a few weeks time, my mind gradually began to shift from frantic thoughts about mothering her to optimistic thoughts about the future. Instead of fearing what she would have trouble doing, or what I didn't know, I began looking forward to learning about her, what she would like and what she would bring to our family. I began to understand that Bridget, and Down syndrome, would be woven seamlessly into our lives. When I realized it was happening already, I started to let go of my fears about the future.

Fast forward two-and-a-half years...to the little girl who talked me into macaroni and cheese for breakfast today, whose giggle will melt your heart. She's the center of attention wherever she goes--not dancing on tables yet, but I can't say it would surprise me in a few years. She's added more to our family than we could ever have imagined, in more ways than we could have known. She's a perfect combination of sweet & spicy, and she doesn't miss a trick. Plus, she's just plain funny.

Brian says it best, "Without Bridget, life would be pretty boring."

Who is to say that "typical" is what we should all be striving for? In many ways, Life is easier when things are predictable, but sometimes we all need a push into the unfamiliar...


**Coming soon : I wish I would have known then what I know now...

Family Picture Part II, The Unfolding

In the early days with Bridget, my mind never stopped racing. I talked to doctors, ate and slept with my mind clicking along. I was constantly thinking about what life was going to be like once we brought Bridget home and how I was going to manage. I'd thought baby #5 was going to be a breeze. Mmm, slight change in plans.

If you've seen our blog or website before, you already know that I had a pretty strong feeling while I was pregnant that Bridget had Down syndrome. I did not, however, go there...except in my mind. Being a planning-type, you'd think I would have learned all sorts of things to prepare, just in case my intuition was right.

But I'm also a realist, and we had no definitive information that she was anything other than a perfectly "healthy" baby. The odds were heavily in our favor for just that. So I made the decision to keep my hunch to myself, and to hope like you-know-what that I was wrong.

I had no idea what a life with Down syndrome meant. Of all the things we envision and want for our children, Down syndrome is not usually on the list. In my last post, I mentioned some of the things I thought about when I looked at the Christmas picture of the kids and tried to imagine our new baby in the mix.

When our ultrasound revealed that we were expecting a little girl, my thoughts shifted to things like room-sharing, hand-me-downs, dance recitals (or maybe soccer games), prom dresses, driving, boyfriends, college, more shoes, another wedding.

And all that is a huge part of my stumbling when Bridget was new. Was life going to be vastly different than what we'd anticipated? How would Ds affect Bridget's life, and our lives? I just couldn't get my mind around what it actually meant for any of us.

Knowing that we don't always get to choose our paths, Chris and I quickly accepted Bridget's diagnosis. We know we have to play the hand we're dealt, whether we asked for it or not.

Many times in those first few weeks, we discussed how deeply we already loved Bridget, and that we'd learn whatever we needed to learn, do whatever it took to be the best parents and advocates we could be for her. Our daily trips to the hospital did more than keep Tim Horton's in business--during our car rides together, we also solved a few of life's greatest mysteries...well, at least in part.

In one of our deeper discussions, we decided that we really don't know what the future holds for any of us, and that the things we envisioned may or may not be part of any of our children's lives--and we'd have to be okay with that.

We also came to realize that any sense of sadness or loss at that point had more to do with us, and the loss of a future that never really existed (what we anticipated, what's typical), than with Bridget.

We decided we'd have to wait for the unfolding of Bridget and her life--for her to grow and become and write her own story--before we knew how it would all play out. We had every reason to think we'd be as awed by her as we are by each of our other children. It is an incredible privilege to see a person grow and become--to see a person unfold.

There were many times in those first few weeks that I felt proud, confident and strong. At other times I slipped far out of my comfort zone, feeling vulnerable, very tired and a little scared. There's so much to learn, I kept thinking. How am I going to advocate for Bridget when I'm still not sure what her having Down syndrome really means?

My head would fill with questions and images of some of the things we'd read or had been told, and I struggled to tell myself that we would find a way to be okay, that Bridget would be okay. I didn't know that for sure, but it is what I wanted to believe. I wanted to have hope.

Bridget was in the hospital for one month. She gained weight, and strength, and showed time and again her strong will and determination. Over a few weeks time, my mind gradually began to shift from frantic thoughts about mothering her to optimistic thoughts about the future. Instead of fearing what she would have trouble doing, or what I didn't know, I began looking forward to learning about her, what she would like and what she would bring to our family. I began to understand that Bridget, and Down syndrome, would be woven seamlessly into our lives. When I realized it was happening already, I started to let go of my fears about the future.

Fast forward two-and-a-half years...to the little girl who talked me into macaroni and cheese for breakfast today, whose giggle will melt your heart. She's the center of attention wherever she goes--not dancing on tables yet, but I can't say it would surprise me in a few years. She's added more to our family than we could ever have imagined, in more ways than we could have known. She's a perfect combination of sweet & spicy, and she doesn't miss a trick. Plus, she's just plain funny.

Brian says it best, "Without Bridget, life would be pretty boring."

Who is to say that "typical" is what we should all be striving for? In many ways, Life is easier when things are predictable, but sometimes we all need a push into the unfamiliar...


**Coming soon : I wish I would have known then what I know now...

Ds and Nutritional Supplementation

Bridget was in the hospital for a month after she was born, and I was there with her most of that time. When I was at home, there was so much to do, and the other kids needed me. I did not have a chance to spend endless hours on the computer doing research. Either there were not as many Ds blogs then, or I was unable to find them. I probably would have spent as much time as I could reading personal experiences. I wanted information, and to feel hopeful.

I was looking for basic information about Down syndrome and what we might experience with Bridget. I found the incredibly comprehensive and helpful Riverbend Down Syndrome Support Group website, and printed out sections of interest to read at the hospital.

I was mostly concerned with things that applied to Bridget's first three months of life. I spent quite a bit of time researching the nutritional needs of premature babies and feeding issues in babies with Down syndrome. I really wanted to nurse Bridget and was determined to do everything I could to give us the best chance at successful breastfeeding.

Knowing that each child is unique, and that there were many things I could do little more than worry about at that point, I tried to not look too far into the future.

I came across information on Targeted Nutritional Intervention (TNI) and NuTriVene-D. I was skeptical at first, but came to the conclusion that nutritional supplementation was something I should at least consider. I did not feel the need to "fix" Bridget, or to change her...but I certainly didn't want to miss an opportunity to improve her health or to help her fulfill her own potential. Chris and I knew right away that we wanted to be open and creative in parenting and caring for Bridget, and in giving her a great start in life.

I printed out detailed information about TNI and gave it to our pediatrician to look over. She felt that Bridget may benefit and that it was not likely to do harm. She would have supported us if we'd decided to try it.

After careful consideration, we decided not to use TNI. There were three main reasons: (1) We wanted to get to know Bridget without medications or supplements. I felt strongly that waiting several months to start TNI would not be harmful. (2) Once she was able to leave the hospital, it was clear to us that Bridget was thriving. Her muscle tone was good, and she was alert and active. (3) After reading testimonials, talking to people who had used TNI, and fact-checking as much as possible, we still were not convinced of the benefit. (Additionally, Bridget had some minor GE reflux issues, and the literature explained that increased reflux was a potential side effect of the treatment.)

We are very content with our choice not to use nutritional and dietary supplementation with Bridget. She's been incredibly healthy so far. I'm always interested, though, in hearing about all the ways children with Down syndrome may be helped to meet their full potential.

Our pediatrician recently asked if I had seen the Changing Minds Foundation website. I had not. (One of her other patients with Ds wanted her professional opinion on the Changing Minds protocol.)

I am curious to hear what others have found and experienced. Please post here, or email me if you are using, or have used TNI or the Changing Minds Foundation protocol.

Ds and Nutritional Supplementation

Bridget was in the hospital for a month after she was born, and I was there with her most of that time. When I was at home, there was so much to do, and the other kids needed me. I did not have a chance to spend endless hours on the computer doing research. Either there were not as many Ds blogs then, or I was unable to find them. I probably would have spent as much time as I could reading personal experiences. I wanted information, and to feel hopeful.

I was looking for basic information about Down syndrome and what we might experience with Bridget. I found the incredibly comprehensive and helpful Riverbend Down Syndrome Support Group website, and printed out sections of interest to read at the hospital.

I was mostly concerned with things that applied to Bridget's first three months of life. I spent quite a bit of time researching the nutritional needs of premature babies and feeding issues in babies with Down syndrome. I really wanted to nurse Bridget and was determined to do everything I could to give us the best chance at successful breastfeeding.

Knowing that each child is unique, and that there were many things I could do little more than worry about at that point, I tried to not look too far into the future.

I came across information on Targeted Nutritional Intervention (TNI) and NuTriVene-D. I was skeptical at first, but came to the conclusion that nutritional supplementation was something I should at least consider. I did not feel the need to "fix" Bridget, or to change her...but I certainly didn't want to miss an opportunity to improve her health or to help her fulfill her own potential. Chris and I knew right away that we wanted to be open and creative in parenting and caring for Bridget, and in giving her a great start in life.

I printed out detailed information about TNI and gave it to our pediatrician to look over. She felt that Bridget may benefit and that it was not likely to do harm. She would have supported us if we'd decided to try it.

After careful consideration, we decided not to use TNI. There were three main reasons: (1) We wanted to get to know Bridget without medications or supplements. I felt strongly that waiting several months to start TNI would not be harmful. (2) Once she was able to leave the hospital, it was clear to us that Bridget was thriving. Her muscle tone was good, and she was alert and active. (3) After reading testimonials, talking to people who had used TNI, and fact-checking as much as possible, we still were not convinced of the benefit. (Additionally, Bridget had some minor GE reflux issues, and the literature explained that increased reflux was a potential side effect of the treatment.)

We are very content with our choice not to use nutritional and dietary supplementation with Bridget. She's been incredibly healthy so far. I'm always interested, though, in hearing about all the ways children with Down syndrome may be helped to meet their full potential.

Our pediatrician recently asked if I had seen the Changing Minds Foundation website. I had not. (One of her other patients with Ds wanted her professional opinion on the Changing Minds protocol.)

I am curious to hear what others have found and experienced. Please post here, or email me if you are using, or have used TNI or the Changing Minds Foundation protocol.

Evaluations & Assessments

The way the system works, service providers need to evaluate Bridget and record their observations in order to justify the specialized help. I have given much thought to the process of evaluation and assessment--of defining the need for assistance and, by default, pointing out all the ways a person is "broken" and needs "fixed".

I realized recently that this process will be a fixture in our lives for some time to come. I have considered (heavily) my role in supporting Bridget, and how much to push--how far to go to see results.

Our own feelings regarding interventions and therapies began to come into focus early. After being in the hospital for Bridget's first month of life, we were enjoying our days with her at home. We spent the first several months just caring for Bridget and getting to know her. That time allowed us to develop not only routines, but also strong bonds with Bridget. It provided stability for our whole family. We first met with Help Me Grow when she was two months old, but chose not to start services for several more months. I truly feel that we made the right decision.

We have a great Early Intervention (EI) team. We work together to track Bridget's progress and to determine how best to encourage and support her learning. We see Bridget’s EI team (team leader, OT, PT) once a month, and have her therapists out on an as-need basis. For us, home-based and family-centered services are best whenever possible. There are many families that include outside therapy as much as once a day, but what works best for one individual or family may not work for another.

I write monthly updates on Bridget's progress in all areas, and on what we have been doing at home each month. I also provide information on any medical appointments or tests, or any changes in status that her team should know about. They, in turn, provide me with feedback after each visit as well as support materials to accomplish goals we have set together.
I am open with all of our intervention specialists and am very active in helping Bridget move to the next stages of development, but I've asked not to be given every detail of her assessments. General areas of strength and areas needing focus are plenty of information.

Bridget was just over five months old when we had her first evaluation with her EI team. She was a "superstar", hitting all the marks for a baby in her age range (adjusted for prematurity--she was six weeks early). In the "social/emotional" category, she actually ranked above other babies her "real" age--including "typical" babies. She was alert, and aware, and strong. She was rolling over both ways, vocalizing a lot, bringing objects to her mouth, bringing her hands together, trying to imitate singing, clearly communicating her needs and wants, and lifting her head and shoulders off the floor when on her tummy. She was nursing well and getting ready to begin solid foods.

I already knew she was thriving, but the evaluation was exciting and affirmed all my own thoughts. The team clearly enjoyed Bridget, and they seemed really happy--although a little bit surprised, I think--to see how well she was doing. There was lots of smiling, and clapping, and "Yeah, Bridget!" I was gently cautioned that the evaluations are "harder" (as they include more specific tasks) as children grow. Generally, for kids with Down syndrome, the "lag" gets more obvious as time goes by.

At her nine month evaluation, Bridget did all sorts of great things. She sat independently; experimented with many different sounds (short bursts & long strings of sounds, loud & quiet sounds, squealing); she stood with help; passed toys freely from one hand to the other; and was generally animated and willing to show all of her skills. She showed only minor delays in that evaluation. She could not, however, hold a cracker and eat it herself, so she did not get a check in that box--it had to be left empty and she "lost points" for not possessing that skill.

This was a critical moment in my understanding of my role in Bridget's growth and development, and in determining how far to take interventions and therapies. How important was it that she was a "superstar"--proving everyone wrong that said she would never (fill in the blank), or would not (fill in the blank) within the "typical" time frame, or would not (fill in the blank) as well as her peers? I could have let the fact that she was unable to feed herself a cracker eat me alive. In the past, I just might have. I might have decided: Okay...we are going to do this...we are going to make sure she can eat a cracker for the next evaluation. She'll show them. We'll show them.

The truth is, I had never really given her crackers to eat herself. I tried once. She could easily hold the cracker and bring it to her mouth, but shoved the whole thing inside. She had no teeth, and little saliva, and was not really "chewing", so it just was not the right time. I lunged forward to swipe the cracker out of her mouth, and she ended up sobbing. It was not the best start to independent eating :).

The evaluation reminded me that many 9-month-old babies are feeding themselves crackers, and Bridget was not. With tons of work (and me letting go of my fear of choking), Bridget might have been able to perform this skill earlier. But when I really thought about it, I realized that it just didn't matter. Was I going to cling to every point on these evaluations? Was I going to make sure we focused on every little thing that was pointed out? Was I going to drive us all crazy with daily therapy sessions and working tirelessly on all the things Bridget could not yet do?

I knew Bridget was learning. I knew Bridget was working toward milestones. I knew she was happy, healthy and secure. Our whole family was involved in her development by playing with her, talking to her, and generally making her an important part of everything we do.

I knew right then that I had to put my (or anyone else's) motives aside and look instead for Bridget to reveal her own. We look to her for readiness "cues".

We've all learned the signs for things in our everyday life that are important to Bridget, and we've learned techniques to help her reach milestones in all areas of her development. With her, our work is play, and our play is really "work". Together, we are making lots of progress, its just that we are making it fun and following her lead...


**The ages of birth to three are truly the foundation for a person's learning. Early Intervention programs are important and necessary. For us, and with Bridget's own personality, less has been more. We make it a priority to be active learners along with Bridget, and to surround her with books as well as educational toys and experiences--and a lot of love.

**Jennifer Graf Groneberg's Perfectly Imperfect also takes a look, although much more eloquently :), at this same issue.

Evaluations & Assessments

The way the system works, service providers need to evaluate Bridget and record their observations in order to justify the specialized help. I have given much thought to the process of evaluation and assessment--of defining the need for assistance and, by default, pointing out all the ways a person is "broken" and needs "fixed".

I realized recently that this process will be a fixture in our lives for some time to come. I have considered (heavily) my role in supporting Bridget, and how much to push--how far to go to see results.

Our own feelings regarding interventions and therapies began to come into focus early. After being in the hospital for Bridget's first month of life, we were enjoying our days with her at home. We spent the first several months just caring for Bridget and getting to know her. That time allowed us to develop not only routines, but also strong bonds with Bridget. It provided stability for our whole family. We first met with Help Me Grow when she was two months old, but chose not to start services for several more months. I truly feel that we made the right decision.

We have a great Early Intervention (EI) team. We work together to track Bridget's progress and to determine how best to encourage and support her learning. We see Bridget’s EI team (team leader, OT, PT) once a month, and have her therapists out on an as-need basis. For us, home-based and family-centered services are best whenever possible. There are many families that include outside therapy as much as once a day, but what works best for one individual or family may not work for another.

I write monthly updates on Bridget's progress in all areas, and on what we have been doing at home each month. I also provide information on any medical appointments or tests, or any changes in status that her team should know about. They, in turn, provide me with feedback after each visit as well as support materials to accomplish goals we have set together.
I am open with all of our intervention specialists and am very active in helping Bridget move to the next stages of development, but I've asked not to be given every detail of her assessments. General areas of strength and areas needing focus are plenty of information.

Bridget was just over five months old when we had her first evaluation with her EI team. She was a "superstar", hitting all the marks for a baby in her age range (adjusted for prematurity--she was six weeks early). In the "social/emotional" category, she actually ranked above other babies her "real" age--including "typical" babies. She was alert, and aware, and strong. She was rolling over both ways, vocalizing a lot, bringing objects to her mouth, bringing her hands together, trying to imitate singing, clearly communicating her needs and wants, and lifting her head and shoulders off the floor when on her tummy. She was nursing well and getting ready to begin solid foods.

I already knew she was thriving, but the evaluation was exciting and affirmed all my own thoughts. The team clearly enjoyed Bridget, and they seemed really happy--although a little bit surprised, I think--to see how well she was doing. There was lots of smiling, and clapping, and "Yeah, Bridget!" I was gently cautioned that the evaluations are "harder" (as they include more specific tasks) as children grow. Generally, for kids with Down syndrome, the "lag" gets more obvious as time goes by.

At her nine month evaluation, Bridget did all sorts of great things. She sat independently; experimented with many different sounds (short bursts & long strings of sounds, loud & quiet sounds, squealing); she stood with help; passed toys freely from one hand to the other; and was generally animated and willing to show all of her skills. She showed only minor delays in that evaluation. She could not, however, hold a cracker and eat it herself, so she did not get a check in that box--it had to be left empty and she "lost points" for not possessing that skill.

This was a critical moment in my understanding of my role in Bridget's growth and development, and in determining how far to take interventions and therapies. How important was it that she was a "superstar"--proving everyone wrong that said she would never (fill in the blank), or would not (fill in the blank) within the "typical" time frame, or would not (fill in the blank) as well as her peers? I could have let the fact that she was unable to feed herself a cracker eat me alive. In the past, I just might have. I might have decided: Okay...we are going to do this...we are going to make sure she can eat a cracker for the next evaluation. She'll show them. We'll show them.

The truth is, I had never really given her crackers to eat herself. I tried once. She could easily hold the cracker and bring it to her mouth, but shoved the whole thing inside. She had no teeth, and little saliva, and was not really "chewing", so it just was not the right time. I lunged forward to swipe the cracker out of her mouth, and she ended up sobbing. It was not the best start to independent eating :).

The evaluation reminded me that many 9-month-old babies are feeding themselves crackers, and Bridget was not. With tons of work (and me letting go of my fear of choking), Bridget might have been able to perform this skill earlier. But when I really thought about it, I realized that it just didn't matter. Was I going to cling to every point on these evaluations? Was I going to make sure we focused on every little thing that was pointed out? Was I going to drive us all crazy with daily therapy sessions and working tirelessly on all the things Bridget could not yet do?

I knew Bridget was learning. I knew Bridget was working toward milestones. I knew she was happy, healthy and secure. Our whole family was involved in her development by playing with her, talking to her, and generally making her an important part of everything we do.

I knew right then that I had to put my (or anyone else's) motives aside and look instead for Bridget to reveal her own. We look to her for readiness "cues".

We've all learned the signs for things in our everyday life that are important to Bridget, and we've learned techniques to help her reach milestones in all areas of her development. With her, our work is play, and our play is really "work". Together, we are making lots of progress, its just that we are making it fun and following her lead...


**The ages of birth to three are truly the foundation for a person's learning. Early Intervention programs are important and necessary. For us, and with Bridget's own personality, less has been more. We make it a priority to be active learners along with Bridget, and to surround her with books as well as educational toys and experiences--and a lot of love.

**Jennifer Graf Groneberg's Perfectly Imperfect also takes a look, although much more eloquently :), at this same issue.

Doing the Dreaming for Herself

When Bridget was born, Chris and I talked a lot about what her diagnosis meant in the scope of her life and in all of our lives. We knew things would be "different" than we'd anticipated, but we wondered, how different?

We were concerned foremost with her health. We decided we would learn whatever we could to advocate for her in every way we could. We agreed that we would focus on getting her well enough to come home. We discussed large issues like education, driving, and marriage. Would Bridget be able to attend a regular school? Would she ever drive? Was marriage out of the question for her?

We also wondered about everyday life. Would she be sick often? How would raising her be different from raising the other kids? How would their lives be impacted? Would we be able to take family vacations? What about leaving the kids with a babysitter? Would we always be worried about Bridget?

The questions were endless at first, and the process is one we needed to go through to realize: things are not much different than what we anticipated when we found out we would be adding a new member to our family. The truth is, we never know what a child will be like, what he or she will require, achieve or struggle with. We never know if a child will be healthy, independent, happy, and so on. Who's to say if any of our children will drive, go to college, get married, or live independently. We really don't know at this point. We're not consumed by the need to know how it will all play out. And, honestly, the future for our children is not for us to plan out.

Once we'd talked through all these issues, Chris and I realized that many of these things are outside of our control, and what's most important to us is that our children are happy & able to contribute to the world in some way. Each one of us has a unique personality. We all have our issues and our strengths. We will all go through times when we require more attention or more support than usual. We all have something valuable to contribute.

With Bridget, we are learning to be hopeful without expectations. We have plans and goals to help Bridget in her growth and development, and while those plans are necessary and important--we cannot be tied to them. Bridget is on her own path, and will develop in her own ways on her own time. We can provide her experiences and exposure to things which may influence her development, but her own personality and abilities will dictate what she accomplishes and when.

We don’t want others to judge her against an arbitrary standard of development or of what’s acceptable. We’ve learned that we can’t do that either. There is a fine line between wanting the best for our children, and asking that they meet our ideal. Typical, healthy or not…we cannot dream for our children.

Just as we cannot control the development and interests of any of our other children, Bridget will become who she is. We’ll give her every type of support and encouragement to be as happy, healthy and independent as she can be, but we’ll let her do the dreaming for herself.