Thursday, October 13, 2011

What if

Today Abigail blew me away again with her hidden genius. She is fascinated with the computer and sees her siblings playing with it. Have you ever seen her hands? Abbie has the sweetest, tiniest little hands. Every time she tried to use a mouse, nothing happened. She'd get frustrated and fuss and smack the mouse. I happened to see a travel mouse in a bargain store so I purchased it. It's about, oh, maybe 1/3 of the size of a standard computer mouse.

Once that tiny little mouse was plugged in, and she got her tiny little hand on it, she took off like a shot! She loves the Blues Clues ABC/1-2-3 CD and can do it all by herself, and do it all correctly. You dazzle them, girl, because you're sure impressing me! What a typical toddler. You'll be taking after your biggest brother soon. True story: in preschool, the teachers would ask Jakob to fix their computers, and he could! They would tell him what wasn't working, and he'd fix it.

Let's play the "what if" game today. You know, that game you play with yourself when something unexpected happens in your life, and you're feeling that somehow you could have made things turn out differently.

What if I didn't have that drink at my cousin's wedding?

What if I didn't get that flu shot?

What if I were a better Christian?

What if I hadn't stumbled on the sidewalk and fallen on the ice?

Well, look at this this way. If you had not had the experiences that you have had during your life time, you wouldn't be you, now, would you? Ha ha ha... wrap your head around that sentence if you can.

I know that for me and for other new parents that I've spoken with, often times there is a feeling of guilt and responsibility for your child that has Down syndrome, as if you cause it to happen.

Not so.

Down syndrome is a genetic condition, meaning the genes that make up who you are from the moment of your conception, have been tweaked. Instead of 2 copies of each chromosome (one from Mom and one from Dad), people with Down syndrome have and extra copy of the 21st chromosome. Neat, huh? Designer genes :)

Early on in our journey with Down syndrome, I felt extreme guilt, feeling that my body had somehow failed to do it's job. I have since come to see that my body did it's job perfectly, and created this amazing little person with a beautiful personality and perfect (at least in my eyes) genes.

Playing the "what if" game gets you pretty much nowhere. We live a linear existence. We experience time as a one-way street. There's nothing we can do to go back and change things, so why do we have this obsession with playing "what if"?

What if I hadn't had Abigail? What if I hadn't been blessed by her life? What if I didn't have the privilege of being her Mom? I can't even contemplate that. I can't even think of not having all my children. I love them and don't regret having them for a moment. A moment is the smallest measurement of time. I have not regretted having them for even a moment.

See what I mean? Tell you what.... let's not play "what if" and just get on with enjoying all of the wonderful people with Down syndrome. Huzzah!

Wednesday, October 12, 2011

Experts Abound

Goodness, but I haven't been doing very well with every day posting, have I? Sorry about that. Honestly, by the time bed time rolls around, I can't think of anything but when I'll be able to close my eyes.

So, the last few days, during my research (yes, I research all the time. Maybe I should have been a researcher instead of a teacher!) I've read some reports and findings that are real, well, doozies. I like that word. It pretty much sums up the impression of how ridiculous, spurious, and wildly illogical we (humans) can be.

A new report from one "expert" claims to have found a "cure" for Down syndrome. He's developed a procedure to diagnose earlier in pregnancy so the parents can abort sooner. Hmm. Some "cure", dude. I just hope he's not researching any cures for cancer, traumatic brain injury, or the common cold, or we're in real trouble.

I find this report so horrifying that if I don't laugh at it and try to view it as a joke, I think I'll just explode. The really scary part is.... he's serious. Maybe he's a proponent of Hitler's views, seeking to 'purify' the human race. Hey, you never know.

Another of my favorites is all of the experts I meet on the street (figuratively speaking). For instance, store cashiers seem to be experts in many different fields. Total strangers at the playground are another resource for 'expert' opinions. Some of my favorite experts are those that don't even have kids. Ahh, their wisdom and insight astound me. (Are you catching the sarcasm, here? I hope so....)

Most days I do ok, but some days, I admit, I turn into an Angry Mom. I know that many people mean well, but I have also found that sometimes they just mean to be, well, mean. The stage whispers wondering if I knew before my daughter was born, or if I ever considered teaching my son with autism manners.

Arrghh. I've never claimed that I have as much patience and understanding as I should with people. Sometimes I'm astounded at their utter lack of judgment and use of common sense (not to mention common courtesy). It's one thing when friends or even strangers approach and ask a meaningful question. Generally you can easily tell the difference. Questions asked in sarcastic or condescending tones of voice aren't genuine. Questions asked with sincerity and respect, I have no problem answering. Ask away! I'd love to help you learn!

On the flip side, I would never dream of accosting a stranger in the grocery aisle and [insensitively] asking if they knew about their child's disability before birth (as if they would obviously have chosen to do away with said defective child).

It's like when you're pregnant, everyone in the world feels comfortable approaching you and rubbing your abdomen. Think about it. If you did that sans prego, can you imagine how fast the police would be there for charges of a lewd advance or assault?

Just because I have a child with disabilities does not mean you are free to approach me and ask thoughtless, personal questions and make life decisions for me. People used to come up to me and say "twins? Boy and Girl? At least you're done, now!". Excuse me, but isn't that my personal choice? Who made you my family planner? I loved responding by saying "no I'm not!" or asking "why would I be done?" and watch their faces. Too funny.

Ok, I'm done ranting for the day. I promise to be in a better mood next post. Sometimes I just need to vent :)

Sunday, October 9, 2011

No, I'm not

I understand that people mean well and want to let me know. I get that and I thank you from the bottom of my heart for thinking so well of me; but I'm not.

I'm not a special Mom; I'm no different than you. Our family was blessed with the gift of our daughter with Down syndrome. We were not given this gift because we're different than anyone else.

When you tell me that, it immediately places upon me an extra responsibility and expectation that I can't possibly live up to. I don't have more patience than you. I don't know more than you (I've learned it all through necessity... just like you would if it were your child). I'm not stronger than you, or tougher than you, or more capable than you are as a parent.

As a matter of fact (if truth be told), I sometimes feel less able to live up to what I'm "supposed" to be. When I feel tired or stressed out, I feel that I shouldn't be because I have to be strong and capable all the time. When I'm feeling overwhelmed and scared, I feel that I should be able to handle things better; and never let others see the struggle.

We have been blessed with Abigail, but we were not given specialized or extraordinary powers to deal with it. We're just parents who love our children and strive to do our best.

I appreciate your good will, but please don't tell me I'm special because no, I'm not. I'm just human.

Saturday, October 8, 2011

A day late...

... and a dollar short". Maybe that should be my new mantra :)

Abbie Story:
Cassidy had a friend to stay overnight. She brought her hand-held video game along with her (I don't know which one, exactly). Well, Abigail discovered that amazing little piece of technology. She decided to show us all just what she can do by figuring out how to use it! She had a blast taking pictures and video, and found the drawing tool as well. Go Abbie! I think she's been holding out on me, learning all these skills and not telling me ;)

I've missed a few days blogging with sleepovers, visits to farms, Boy Scout and Girl Scout plans and activities, and LYO activities. Tomorrow promises to be just as jam-packed with "things to accomplish".

Lessons Learned:
The last few days, I've been pondering the uses of facts and figures. I've been trying to place a fact every day on my FB page to help spread knowledge even more. I sit and read facts and figures and basically came up with this question... "What do they MEAN?!".

I think that, in and of themselves, numbers are neutral. It's what we do with them that makes them good or bad. For instance, I could tell you that I had to tell one of my kids 20 times this week where his shoes were. It might sound excessive unless I also tell you that last week, I had to tell him 40 times. I could use these numbers to paint a poor picture, or I could use these numbers to celebrate an accomplishment.

It's my choice.

So many medical journals and web sites cite statistics about DS as if the numbers alone are some mystic, all-knowing force. For example.. "40 percent have heart defects"... I haven't yet seen anyone state that 60 percent do not have heart defects.

It's my perspective.

I also take issue with Dr.'s that say things such as "your child WILL have heart defects, hearing loss, strabismus, bowel problems, etc., etc. etc.". How do they know? Most children with Down syndrome have a little of this, or a little of that, or a little of everything, or almost nothing. They DO NOT KNOW. Maybe that's why it's such a frightening diagnosis for parents. We have no reassurances and no answers. Sometimes it's very, very difficult to take that leap of faith off the edge of a cliff over crashing waves.

It's my privilege and great joy to have taken that leap.

Wednesday, October 5, 2011

Pony Braids

Abbie Story:
Today Abigail wore her hair in a 'pony braid', as Cassidy named it. I pull up a pony tail, then braid it. I hate to admit it, but Abigail did a fair imitation of looking like a Barbie Doll with her hair done up like this. Every time she would run or turn, her pony braid would swing around, and she'd grab the end of it and fling it off her shoulder, and giggle. Silly girl, playing with her beautiful, long hair :)

In other news:
I've shared the beginning of our journey with Down syndrome with you. I hope that it wasn't too long :) I do tend to get writing and get carried away with my thoughts.

The end result of all the initial worries and fears comes down to this; I should have listened to my Dad. He would always tell my siblings and me that everything happened for a purpose, and that everything would work out. He was the perennial optimist.

Things did work out, and we found our new normal in our family routine. Our fears about the older 3 kids and how they would feel were unfounded. Their primary concern was "can we play with her?". Yep. That's it. They see no differences in Abigail from themselves. They were more accepting than we were, and we learned a lot from them. I don't know what we would have done without them to land us right back on our feet and into reality.

Here's a neat little story...our older daughter was asking why I got diapers for Abigail from the pharmacist. I tell her that kids with disabilities often take longer to potty train, so they can get help getting their diapers. She immediately became indignant and stated "Abbie doesn't have a disability, Mom! She was just born that way. That's not fair!". I wish I could bottle up her perfect clarity and her ability to so succinctly state the truth, and distribute it world wide.

Tuesday, October 4, 2011


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 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.

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.....

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 :)

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! :)