Abbie Tale:
Today Abigail was as cute as ever, and went to school wearing her newest acquisition; a pink shirt (surprise!... not) with pink butterflies and sparkly pink heart buttons. Ever so "her". Every day when I pick her up from school she flies into my arms. I really, really love that. On the way home, Abigail sang along with one of the songs on the radio. That's a first for Abbie. She's trying to say lots of words every day, but to sing along with distinct sounds for a period of time; that's awesome! Go, chatterbox, go!
DS Back Story:
... so, a few months passed and I find myself settling into a new routine. It seems that I have to keep saying to myself over and over "my daughter has Down syndrome", like it just wasn't sinking in. We started speech therapy, and physical therapy, and occupational therapy, and had special ed consult visits... all on a daily & weekly basis. The new normal for me pretty much boiled down to "I can make it through this morning and get everyone dressed and fed; I can make it through this hour and get J, K, and C on the bus; I can make through this hour of PT before I make the next cardiologist appointment; I made it through this day and got all the kids in bed".
Sounds kind of whiny, huh? I'm not trying to be a martyr or complain. I'm just trying to share what my state of mind was at the time. I often felt like I was just sort of going through the motions, and things would just happen and I was along for the ride. I often felt like I was in a bit of a fog, and would find a week had gone by and I couldn't pick out specific days.
We both (David and I) seemed to switch into autopilot and just make it through each day, trying not to focus on Abigail's upcoming heart surgery when she was 5 1/2 months old. I spent many a night lying awake, listening in the dark to make sure I could still hear her breathing in the bassinet that was placed by our bed.
Abigail was a total rock start for her heart surgery. She came through with flying colors, her PDA was ligated, her ASD was stitched, and her VSD was patched. She was home in just 4 days and picked up therapy right where she left off. Removing the worry of looming heart surgery helped us to relax and learn to really take time to just enjoy having her.
When Abbie turned 9 months old, I awoke one morning and walked into her room and said "good morning, Sunny!" like I usually did. I started changing her diaper and burst into tears. Nope, it wasn't that the diaper was stinky ;) It's that I had just realized, that for the very first time ever, the very first time since she was diagnosed with DS, I just looked at her and thought "my baby girl! good morning! so beautiful! I love you!", instead of "She has Down syndrome... my baby girl...so beautiful... I love you!"
This, for me, was a real breakthrough moment. I carried Abigail for just over 8 months under my heart, but it took me 9 months to have my daughter.
Tuesday, October 4, 2011
Monday, October 3, 2011
Smiles to Go
Today, Abigail decided to be a monkey. She was repeating everything I said, which is such a joy to hear! On the way to school today, she was even "singing" with me in the van. When she woke up and I said "hello there, Sunny" to her, she opened her beautiful, bright, brown eyes, looked into mine, and gave me a smile to melt my heart. Since she loves music therapy so much, and her therapist uses a guitar, Daddy set her up on guitar hero last night. She had a blast! I think she wants a guitar for Christmas!
So, to continue our story, why was Abigail sent to us? Why was this happening "to us"? What would we say to people? How would we explain this to the kids? What type of prejudice would she have to endure? Would she ever walk and talk; ride a bike; go to school?
These are the kinds of questions that ran through my brain. Today I look back at those thoughts and cringe. How small my faith felt at that time. How unworthy and forgotten and, yes, betrayed I felt.
As the weeks went on, and I fell more and more in love with our daughter, I came to resent my preoccupation with my fears about what people would think or say. I began to resent myself. Now there's an odd feeling. I had to accept that this was the way Abigail was, and would always be. A bitter pill of truth.
I think that just about any parent with a child that has been diagnosed with a disability would be able to relate to this. At the very moment that your child is given a diagnosis (especially if it wasn't anticipated), your life is unalterably changed. There are no do-overs, no 'fixes', no negotiations, and no going back. What you do with this realization, and how you respond, that will set the tone for the life of your child.
That, my friends, is a daunting responsibility.
To act, no react; to try and look into the future and view the best course, when you've suddenly been set on a trail with no map; to select a best course of action without understanding the rules; to edit a script without knowing the full story.....
So, to continue our story, why was Abigail sent to us? Why was this happening "to us"? What would we say to people? How would we explain this to the kids? What type of prejudice would she have to endure? Would she ever walk and talk; ride a bike; go to school?
These are the kinds of questions that ran through my brain. Today I look back at those thoughts and cringe. How small my faith felt at that time. How unworthy and forgotten and, yes, betrayed I felt.
As the weeks went on, and I fell more and more in love with our daughter, I came to resent my preoccupation with my fears about what people would think or say. I began to resent myself. Now there's an odd feeling. I had to accept that this was the way Abigail was, and would always be. A bitter pill of truth.
I think that just about any parent with a child that has been diagnosed with a disability would be able to relate to this. At the very moment that your child is given a diagnosis (especially if it wasn't anticipated), your life is unalterably changed. There are no do-overs, no 'fixes', no negotiations, and no going back. What you do with this realization, and how you respond, that will set the tone for the life of your child.
That, my friends, is a daunting responsibility.
To act, no react; to try and look into the future and view the best course, when you've suddenly been set on a trail with no map; to select a best course of action without understanding the rules; to edit a script without knowing the full story.....
Sunday, October 2, 2011
Location, Reprise
Hello again! Today I begin my participation in the "31 for 21" campaign to raise awareness of Down syndrome. The "31" stands for the 31 days of October, which is Down syndrome awareness month. The "21" stands for the 3 copies of the 21st chromosome, which results in a child having Down syndrome.
Please bear with me if this is a repeat for those of you that have listened to my endless praises and explanations of our youngest daughter. For those of you who are new, here's some background info to get you started.
I will do my best to be brutally honest, and gently uplifting. Abigail has been nothing but a blessing to us in every way. It just took a bit of time to realize this :)
I think I'll start each post with a little "Abbie story" of what she's been up to. She is, after all, 4 years old and endlessly inventive with what she can get into. Every day has a smile in it with Abigail. Today at lunch, she decided to imitate her sister's silliness and eat her pretzels with a fork. She's such a little copy cat and a total goofy girl. She loves tickles and asks for them on a daily basis. After lunch, she and the twins were playing with a balloon. She was on the floor and the balloon bounced off her bottom. She looked down at her behind, patted with her hand, and stated "ouch!". Yeah, right, silly girl. You're wearing a diaper! No ouchies there :)
We have 4 children, and our youngest daughter has Down syndrome. She will be turning 5 in December (already?)! Abigail was born on my 41st birthday; undeniably my BEST birthday gift EVER! She was not diagnosed prenatally with Down syndrome. We were informed that we were in the high-risk group primarily due to my age. I had several ultrasounds during my pregnancy which were all perfectly normal, with no soft signs of DS. My blood tests just squeaked into the abnormal range by the barest minimum.
When Abigail was born, my obstetrician offered the observation that "I'm certainly no expert, but she looks just fine to me!". Our Pastor pretty much said the same thing. Our pediatrician, upon her first examination of Abigail said "I'm just not seeing it". Personally, in my heart, I believed she did have DS, even though I was praying that she did not. Hearing all of these comments from 'experts' was a huge comfort, and I thought my gut feeling must just have been my fears catching up with me.
At 4 1/2 weeks of age, we received the diagnosis of Down syndrome from the (multiple) karyotypes [karyotype=blood tests that are taken and used to view genetic material to determine if there are any abnormalities] that were done at the hospital.
I have to say, that was one the the LONGEST months of our lives, waiting; wondering; praying; crying; begging for answers. When we received the official diagnosis, I didn't cry. I just asked "so what do we do now? How do we move forward with this?". We were put in touch with Early Intervention services and life went on and we were good with everything... right?
Well, sort of. I remember people telling me "it could be worse!", or "I'm so sorry! (sorry that my child was born?! WT*?!) or my personal favorite "it's not the end of the world, you know", and and in my head my reply was "No, just the end of mine". I cried in the shower every day for weeks, wondering why.
I eventually found my answer, but you'll have to keep reading my daily posts to find out what it was :)
Please bear with me if this is a repeat for those of you that have listened to my endless praises and explanations of our youngest daughter. For those of you who are new, here's some background info to get you started.
I will do my best to be brutally honest, and gently uplifting. Abigail has been nothing but a blessing to us in every way. It just took a bit of time to realize this :)
I think I'll start each post with a little "Abbie story" of what she's been up to. She is, after all, 4 years old and endlessly inventive with what she can get into. Every day has a smile in it with Abigail. Today at lunch, she decided to imitate her sister's silliness and eat her pretzels with a fork. She's such a little copy cat and a total goofy girl. She loves tickles and asks for them on a daily basis. After lunch, she and the twins were playing with a balloon. She was on the floor and the balloon bounced off her bottom. She looked down at her behind, patted with her hand, and stated "ouch!". Yeah, right, silly girl. You're wearing a diaper! No ouchies there :)
We have 4 children, and our youngest daughter has Down syndrome. She will be turning 5 in December (already?)! Abigail was born on my 41st birthday; undeniably my BEST birthday gift EVER! She was not diagnosed prenatally with Down syndrome. We were informed that we were in the high-risk group primarily due to my age. I had several ultrasounds during my pregnancy which were all perfectly normal, with no soft signs of DS. My blood tests just squeaked into the abnormal range by the barest minimum.
When Abigail was born, my obstetrician offered the observation that "I'm certainly no expert, but she looks just fine to me!". Our Pastor pretty much said the same thing. Our pediatrician, upon her first examination of Abigail said "I'm just not seeing it". Personally, in my heart, I believed she did have DS, even though I was praying that she did not. Hearing all of these comments from 'experts' was a huge comfort, and I thought my gut feeling must just have been my fears catching up with me.
At 4 1/2 weeks of age, we received the diagnosis of Down syndrome from the (multiple) karyotypes [karyotype=blood tests that are taken and used to view genetic material to determine if there are any abnormalities] that were done at the hospital.
I have to say, that was one the the LONGEST months of our lives, waiting; wondering; praying; crying; begging for answers. When we received the official diagnosis, I didn't cry. I just asked "so what do we do now? How do we move forward with this?". We were put in touch with Early Intervention services and life went on and we were good with everything... right?
Well, sort of. I remember people telling me "it could be worse!", or "I'm so sorry! (sorry that my child was born?! WT*?!) or my personal favorite "it's not the end of the world, you know", and and in my head my reply was "No, just the end of mine". I cried in the shower every day for weeks, wondering why.
I eventually found my answer, but you'll have to keep reading my daily posts to find out what it was :)
Location, Location, Location
Do you ever think about where you are? There's a business adage that states your success or failure is all about where you are situated. I have to say I can't agree.
If this were the case, why are there small, out-of-the-way places that have endured for decades, while a big box store on a major intersection folds after just 2 years of business? I think perhaps it would be better to say that your success or failure depends upon where your heart is, where your passion resides.
In this respect, my location would have to be my family and friends. This is where my heart lives. This is where I can feel happy, content, useful, and valued. I think this is very important... feeling valued.
What it all boils down to is this: my mother is (again) right. Home is where the heart is :)
SPECIAL NOTE: October 1st is the beginning of the "31 for 21" campaign, where parents of children or loved ones with Down syndrome blog for one month about their lives and experiences. I'm a day late, but I will be participating in this celebration of the blessing of Down syndrome. Please join me!... and wish me luck... I have to find time to post every day! :)
If this were the case, why are there small, out-of-the-way places that have endured for decades, while a big box store on a major intersection folds after just 2 years of business? I think perhaps it would be better to say that your success or failure depends upon where your heart is, where your passion resides.
In this respect, my location would have to be my family and friends. This is where my heart lives. This is where I can feel happy, content, useful, and valued. I think this is very important... feeling valued.
What it all boils down to is this: my mother is (again) right. Home is where the heart is :)
SPECIAL NOTE: October 1st is the beginning of the "31 for 21" campaign, where parents of children or loved ones with Down syndrome blog for one month about their lives and experiences. I'm a day late, but I will be participating in this celebration of the blessing of Down syndrome. Please join me!... and wish me luck... I have to find time to post every day! :)
Sunday, September 11, 2011
Thinking of Threads
Thread is really an amazing thing. It comes in so many pretty colors and shades; it comes in different materials (cotton vs. synthetic); it can be smooth or rough; it can be thick or fine. Despite all these differences, thread's main purpose is to stitch things together and hold them in place. Don't you think it's neat that such a thin little piece of long string is all it takes to make clothing or crafts and that it's strong enough to keep them that way?
Maybe that's why I enjoy sewing so much. I'm always amazed at the projects I make and tend to take a little longer than really necessary to make them. I like to just hold them up and admire the wonder of stitches of thread that just made that sleeve, or that pretty gather, or that hem. Amazing stuff, thread.
Thread reminds me that it's the littlest things that hold us together. A thoughtful word, a smile of understanding, a nod of acknowledgement, an unexpected gift (thank you SO much... you know who you are!... that helped allow us to get all the school supplies for the kids). These are all the tiny, beautiful, often times unnoticed bits of thread that hold me together and keep me from flying apart.
Rips and tears are bound to happen, but if you'll notice, often times it's just a small stretch of thread that has worn away. All you have to do is replace that bad spot with a few tiny, new stitches and you're good to go. Sometimes I feel like I need some extra thread, and sometimes I try to be a bit of thread for someone else to help them mend a seam.
Yarn is like thick thread, too. Again, that's probably why I love to crochet so much. I take one, long piece of thread and knot it in different ways and make something useful out of it. That's cool. When you come to the end of one skein, you just work in the new piece and keep on going. The same piece of yarn, and you can use it to make a hat or purse or dress or cape or blanket or cloth. A skinny little piece of yarn, thinner than the width of my finger, and I can make a warm jacket to protect my kids, or a cozy blanket to cover a friend. Neat. Nifty. Cool. Awesome. Can you tell this never gets old for me?
Today, on 9-11, when we remember the victims and heroes of such a tragic incident, and how this thread bound together our country ever more tightly, I would like to remember all of my own 'threads', and thank them from the bottom of my heart for holding me together. You are what makes everything possible.
Maybe that's why I enjoy sewing so much. I'm always amazed at the projects I make and tend to take a little longer than really necessary to make them. I like to just hold them up and admire the wonder of stitches of thread that just made that sleeve, or that pretty gather, or that hem. Amazing stuff, thread.
Thread reminds me that it's the littlest things that hold us together. A thoughtful word, a smile of understanding, a nod of acknowledgement, an unexpected gift (thank you SO much... you know who you are!... that helped allow us to get all the school supplies for the kids). These are all the tiny, beautiful, often times unnoticed bits of thread that hold me together and keep me from flying apart.
Rips and tears are bound to happen, but if you'll notice, often times it's just a small stretch of thread that has worn away. All you have to do is replace that bad spot with a few tiny, new stitches and you're good to go. Sometimes I feel like I need some extra thread, and sometimes I try to be a bit of thread for someone else to help them mend a seam.
Yarn is like thick thread, too. Again, that's probably why I love to crochet so much. I take one, long piece of thread and knot it in different ways and make something useful out of it. That's cool. When you come to the end of one skein, you just work in the new piece and keep on going. The same piece of yarn, and you can use it to make a hat or purse or dress or cape or blanket or cloth. A skinny little piece of yarn, thinner than the width of my finger, and I can make a warm jacket to protect my kids, or a cozy blanket to cover a friend. Neat. Nifty. Cool. Awesome. Can you tell this never gets old for me?
Today, on 9-11, when we remember the victims and heroes of such a tragic incident, and how this thread bound together our country ever more tightly, I would like to remember all of my own 'threads', and thank them from the bottom of my heart for holding me together. You are what makes everything possible.
Monday, August 29, 2011
Tea
For those of you who know me, you will not be surprised when I say that I love tea. Not coffee (ack!), not latte, not cappuccino (did I even spell that correctly?), but just tea.
I find that my tea choices reflect my mood. On a day-to-day basis, I stick with Red Rose decaf. If I'm feeling a little harried, I go for the regular RR and the associated caffeine to keep me moving forward. I have at least half dozen choices of tea flavors/types available in my house on any given day; except peach, raspberry, mint, or Earl Grey. Earl Grey is my very least favorite tea EVER. Ugh. Nasty stuff.
Meanwhile, I find my tastes changing from time to time. Sometimes I really like a nice chamomile and hibiscus tea. Soothing and easy. Sometimes I prefer my Zen tea with lemongrass. Refreshing and mellow. Lately I've been enjoying spiced Chai with ginger. Comforting and warm. I suppose you could say that looking at my choice of tea could possibly be a peek into my general mood. It seems lately that I've been enjoying the comfort and warmth of Chai more often.
Hmmm... I wonder what that could mean? Maybe I just read too much into these things. Then again, maybe that means something ?.... ;) Stop in any time, and we'll enjoy a cup of tea.
I find that my tea choices reflect my mood. On a day-to-day basis, I stick with Red Rose decaf. If I'm feeling a little harried, I go for the regular RR and the associated caffeine to keep me moving forward. I have at least half dozen choices of tea flavors/types available in my house on any given day; except peach, raspberry, mint, or Earl Grey. Earl Grey is my very least favorite tea EVER. Ugh. Nasty stuff.
Meanwhile, I find my tastes changing from time to time. Sometimes I really like a nice chamomile and hibiscus tea. Soothing and easy. Sometimes I prefer my Zen tea with lemongrass. Refreshing and mellow. Lately I've been enjoying spiced Chai with ginger. Comforting and warm. I suppose you could say that looking at my choice of tea could possibly be a peek into my general mood. It seems lately that I've been enjoying the comfort and warmth of Chai more often.
Hmmm... I wonder what that could mean? Maybe I just read too much into these things. Then again, maybe that means something ?.... ;) Stop in any time, and we'll enjoy a cup of tea.
Wednesday, July 13, 2011
Grief and Joy
In case you don't know, I'm a convert to adoption of children with special needs, especially those that come from areas that do not value them as human beings. My new favorite site is Reece's Rainbow, and adoption ministry that advocates for children with special needs from other countries, and specifically advocates for children with Down syndrome.
I have read on many, many blogs and web sites that parents of children with Down syndrome end up adopting more kids with Ds. "Why?" you may ask? Well, all I can do is repeat a quote from one site "I didn't know I wanted a child with Down syndrome, until I had one". Unless you've been there, it's very hard to explain the absolute, committed, uninhibited, soul-touching love you both receive and give when you have a child with Down syndrome. Your appreciation of life expands a million-fold. I find as a would-be writer that I am speechless in the face of this amazing phenomenon.
I love reading the descriptions and stories of redemption and inspiration on Reece's Rainbow, and recently fell in love with a little girl whose screen name is Albina. I have heard adoptive parents describe how they just instantly KNEW when they saw THEIR child. I never understood this. I think that all the children are darling, and loved to read their stories, and say prayers for their rescue or release every night.... but then I saw Albina, and my heart was lost. Now I get it.
Although I would take any steps to rescue this angel, in reality it must be a partnership of parents that commit to a child. So, I prayed and prayed and wished and hoped for Albina to be spared the fate of a mental institution when she turns 5 and ages out of her country's "Baby House" care. My prayers were answered, and I can do nothing but REJOICE for this little girl, who will have a family and love and a chance to LIVE.
Now, the flip side. I grieve that I will never meet her, never be able to hold her in my arms and whisper in her ear to let her know just how loved she is. How can I feel such grief amidst such joy that she will be saved? It makes no sense, but there it is. I can't change it. It's just the way I feel.
So, I go on with every day tasks, but in my heart I miss Albina.
My kids inspire me every day to get up, get moving, and learn. They bug me and tease me into doing things I may not want to do. They chatter and bicker until I just want to plug my ears and throw my hands in the air with a plaintive "why me!?". Then they make an observation or ask a question that just makes my heart sing, and I really don't care about daily frustrations and aggravations and trials. It's ok, because I have the very great privilege of having them here with me, where I can make sure they know they are loved and wanted.
That being said, I'm putting over 60 miles a day on my van this week, just to get them to their activities and camps. Even when I'm grumpy or yell at them, they'll tell me "that's ok, Mom. You're just having a bad day". You can't get much better than that. Their understanding and insight sometimes astounds me.
However, if I have to ask those boys to clean their room one more time so I can actually get in there to put clean clothes away, I may just show them how much I love them by taking away their computer time (which to them is a fate worse than death)! Just trying to keep a perspective.
I have read on many, many blogs and web sites that parents of children with Down syndrome end up adopting more kids with Ds. "Why?" you may ask? Well, all I can do is repeat a quote from one site "I didn't know I wanted a child with Down syndrome, until I had one". Unless you've been there, it's very hard to explain the absolute, committed, uninhibited, soul-touching love you both receive and give when you have a child with Down syndrome. Your appreciation of life expands a million-fold. I find as a would-be writer that I am speechless in the face of this amazing phenomenon.
I love reading the descriptions and stories of redemption and inspiration on Reece's Rainbow, and recently fell in love with a little girl whose screen name is Albina. I have heard adoptive parents describe how they just instantly KNEW when they saw THEIR child. I never understood this. I think that all the children are darling, and loved to read their stories, and say prayers for their rescue or release every night.... but then I saw Albina, and my heart was lost. Now I get it.
Although I would take any steps to rescue this angel, in reality it must be a partnership of parents that commit to a child. So, I prayed and prayed and wished and hoped for Albina to be spared the fate of a mental institution when she turns 5 and ages out of her country's "Baby House" care. My prayers were answered, and I can do nothing but REJOICE for this little girl, who will have a family and love and a chance to LIVE.
Now, the flip side. I grieve that I will never meet her, never be able to hold her in my arms and whisper in her ear to let her know just how loved she is. How can I feel such grief amidst such joy that she will be saved? It makes no sense, but there it is. I can't change it. It's just the way I feel.
So, I go on with every day tasks, but in my heart I miss Albina.
My kids inspire me every day to get up, get moving, and learn. They bug me and tease me into doing things I may not want to do. They chatter and bicker until I just want to plug my ears and throw my hands in the air with a plaintive "why me!?". Then they make an observation or ask a question that just makes my heart sing, and I really don't care about daily frustrations and aggravations and trials. It's ok, because I have the very great privilege of having them here with me, where I can make sure they know they are loved and wanted.
That being said, I'm putting over 60 miles a day on my van this week, just to get them to their activities and camps. Even when I'm grumpy or yell at them, they'll tell me "that's ok, Mom. You're just having a bad day". You can't get much better than that. Their understanding and insight sometimes astounds me.
However, if I have to ask those boys to clean their room one more time so I can actually get in there to put clean clothes away, I may just show them how much I love them by taking away their computer time (which to them is a fate worse than death)! Just trying to keep a perspective.
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