Tuesday, February 5, 2013

Out Of the Blue

Well, it's been quite a while, hasn't it?  I don't know who said it, but there's a quote that goes along the lines of "life is what happens when you're making other plans".  I must say, I agree.  I'm working on a blog update, but can't seem to get the exact settings I want.  It's a work in progress.  I'm sure my 3-person fan base will be thrilled :)

Life was very busy in 2012.  The kids have grown, and hopefully I've grown as well.  There's no way to do a recap for the year in one easy sitting, so if you're interested here are the highlights....

     Jakob has grown about a foot and a half, and is now a bit taller than I am.  His voice has changed and he sounds just like his Dad.  He started High School (gulp!) and is growing into a young man I am proud to say is my son.  He is now a Life Scout; one step away from Eagle.  He is learning computer programming from his Dad and I'm just waiting for the day that he announces his own computer system/game/product.

     Kyle has also begun to grow, too (and grow, and grow!).  He decided to drop his trumpet lessons and concentrate on chorus.   He was chosen for all-county choir (yeah, Ky!) and we're looking forward to attending the concert in the Spring.  He is now a Star Scout and working hard to advance, earning the most badges in his troop this past summer at Scout Camp.  He is a great kid.

     Cassidy is growing into a lovely young lady, and is continuing Girl Scouts as a Juliette (by herself).  She's working on selecting her Silver Award project.  She also enjoys chorus, and has joined the cross-country team.  She's fast!  She regularly makes the Honor and High Honor roll at school and I couldn't ask for a more kind-hearted and thoughtful daughter (other than the eye roll and oft-repeated "Mom!").  Such a middle-schooler.

    Abigail now has hearing aids and is doing quite well with them.  She started Kindergarten in a fully integrated classroom and is doing just fine.  She now enjoys dance classes and we can't wait to see the big recital in May.  She can write her name and uses her iPad for supplemental communication and occupational therapy at school.  Here at home, we use sign and she is using more and more words. As always, she continues to amaze and inspire us.

   David and I will be celebrating our 20th Anniversary this year!  Wow!  What a wild and crazy ride it's been.  I am no longer working for a non-profit, but have struck out on my own.  I'll tell you more about that later.  I continue with my writing and I am once again volunteering as the Editor for our local Ds Network.  David helped to form a local chapter of D.A.D.S. (Dads Appreciating Down Syndrome), as well, and is now the VP for our local Ds Network.

   Our yard, front and back, underwent a much-needed overhaul over the summer.  With a little help from the D.A.D.S. Muscle (they totally rock!) group, my front walkway was completely redone.  I then continued the job by finishing up with landscaping, about 8 yards of mulch, setting brick for borders around the entire house, re-laying paving stones for a grill pad out back by the deck, and generally sprucing up the landscaping.  It was lots and lots of hard work, but well worth the effort.  I most certainly got lots of exercise ;)  This coming summer I'll do a bit more finishing and touch up.

Now it's time to greet Abbie as she gets off the school bus, which she totally LOVES to ride.  Go figure...

Thursday, December 15, 2011

Learning Curve

Since Abigail was born, I've discovered that there is a definite pattern to our learning curves. When necessary, we learn. Once we have assimilated the information, we move forward and don't always seek out new learning opportunities until it's needed. This happens for several reasons, one of which is time.

Just about any parent will tell you that kids take time. Lots of time. Appointments, concerts, activities, therapies for children with different needs, grocery shopping, cleaning, laundry.... the list goes on. Yet, when the need arises, we find time to learn.

I am finding the time to learn again.

Abigail had an ENT appointment this week and I requested another hearing test. I requested one last year, but since Abbie was progressing with her speech therapy, it was deemed unnecessary. Yes, I'm doubting myself again. I should have insisted. Could have, should have, would have. Ugh. Around and around I go.

This time, the Doc agreed and Abigail had a hearing test showing that she has hearing loss. I knew she could hear, but I also knew that something just wasn't quite right. She should be progressing further with speech. She shouldn't be transposing sounds and confusing words so often when she so obviously is observant, attentive, and bright. She doesn't answer to speech in a noisy environment.

Please don't get me wrong. I can live with this. I figure that after Kyle's two surgeries, Kyle having been tested for leukemia, Jakob's autism diagnosis, Abigail's diagnosis of Down syndrome, and her open heart bypass surgery at 5 1/2 months, this is really not a major concern. We all view "major" in different ways, I know. Hearing loss is do-able. It is life-changing, but it is not life threatening.

So here I go again, learning about hearing deficits and what types of devices and/or therapies would be best to 'fix' the problem. Next month Abigail will have a second hearing test to confirm the diagnosis and numbers (to define the severity of the hearing loss). Then we'll discuss strategies, as the Doc. put it.

Yes, of course I'll do it. No, of course I don't mind doing anything to help my kids.... BUT... I hate this. I hate that it's necessary. I hate that she's been missing so much for who knows how long. I hate that she could be speaking and has missed out during the prime speech development stages of her young life.

I just feel the need to express my Mommy growl. *Rrrrrggghhhh!*

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.