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.

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! :)

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.

Monday, August 29, 2011


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.

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.

Saturday, July 2, 2011

With a Grateful Heart

Another holiday weekend... the newspaper ads, the fight to get into the grocery store's shortest line, the decorations and picnic plans, the food. We plan for all of these things without a thought in our head but how quickly we can get them done, and how we can maximize our play time.

I'd like to take a moment to stop and say a heart-felt thank you to all of the men and women, past and present, that have made my selfish life possible. In the past, this allowed my ancestors the right to feed their own families, to make their own homes, to practice their own religion, to stand up and be heard. In the present, with a few modern twists, it means the same.

Since I'm on the subject of thanks, I would like to thank my husband and kids for always being there for me, and for supporting me. Everyone needs someone to care; at least 1 person in this world that you can count on to accept you. So, I "give thanks with a grateful heart" that I have the freedom and the luxury to have that. As I am enjoying the good food, fun, and frivolous decorations, I won't forget to say "thank you" in my heart.

Monday, June 27, 2011

How Time Flies

Time to reminisce a bit, so if you don't like schmaltz, you've been given fair warning ;)

Thirteen years ago today, just about this time of night, I went into labor with our first child. We didn't know beforehand if it was going to be a boy or a girl. We just knew we wanted and loved our baby. My water broke about 10 pm, and we were in the hospital somewhere around midnight. My labor progressed fairly quickly, and at 3:43 a.m., with no drugs and no epidural, Jakob was born.

What a monumental phrase... Jakob was born. Wow. What an amazing, beautiful little 6 lb 14 oz. gift he was. Little did we know what a delightful boy and wonderful young man he would become. He had long hair when he was born that stuck straight up, no matter how much you combed it. His uncle used to call him "Kramer" for his hair. After a few months, his hair turned bright red before it settled into a nice golden brown. His littlest sister has the exact same hair color, with red highlights. I love it.

Over the past few months Jakob has been growing by leaps and bounds. He'll be as tall as I am soon. How time flies... my angels have grown so much, and taught me so much, and given me so much more than they'll ever realize. That includes, of course, the streak of grey hair and sleepless nights of worry, but that's ok :) I'd do it over again in a heartbeat for them.

A Very Happy Birthday (in just a few short hours!) to my Jakob. Time might fly, but I'm so grateful and proud that we've been the ones to take this flight with him.

Wednesday, June 22, 2011


Tomorrow is the last day of school for the kids. Abigail had her graduation day for preschool, the twins had field day and made tie-dye shirts, and Jakob's class had a party for a retiring teacher that everyone loves. Hmmmm.... sounds like these half days are really useful and definitely further the academic experience of my children (a bit of sarcasm there-sorry).

Any way, since it's Wednesday, I thought I'd throw out some philosophy for you. Endings. Some endings your dread, some endings you anticipate, and some endings are just... endings for which the time has come. My Dad used to tell us that in the end, everything would work out. Oh, how I longed to dispute that! After all, as a teenager and young adult, we knew better than our parents, right? Ha! If only I knew then what I know now. Dad was right.

Here's a saying that used to be pinned up on my Grandmother's cupboard. I like it so much that one year I had it reproduced and framed for all of my siblings, both as a remembrance and as a reminder. "Today is the tomorrow you worried about yesterday, ... and all is well". Trite? maybe. Schmaltzy? perhaps. True? ABSOLUTELY!

By the by, I'm going back to working on some of my books I never got to finish. I guess the problem is, there's no easy way to get them printed & published. I've asked around, and received answers with instructions about going through guilds, having artists assigned to decide how it should be illustrated (I already know exactly what I want it to look like), or that I have to be a member of a writer's association, etc., etc.

How the heck did J.K. Rowling do it? :)

Monday, June 13, 2011

Proud of My Girl

.... and a busy Monday ensued. Mondays are usually hectic because it's also Scout day for both boys & 'the girl'. Boy Scouts ended in May (what a blessing, and my boys were so awesome!). Girls Scouts has been going strong with projects and outings right up to, and including, today. It was the last meeting day and also their badge ceremony. All the girls lit a candle as part of the GS pledge and spoke a little about what they learned this year in Scouts and what they enjoyed most.

The girls made scrap books for each leader, and also painted wind chimes. There were goodies after the ceremony and tons of giggles. Cassidy did a great job (of course!) and earned a bunch of badges for her sash. Next year we'll have to get a new one in that lovely khaki color for the next level. By the way, just a side note...if you think about it, who came up with the word "khaki" as a name for a color, anyway?

So, finally time to catch a breath before tackling tomorrow. End of school is always hard for my kids. They both do and don't want it to end. The summer is already filling up with camps and events, too. I think a good plan for me at the moment is to go to bed and not think about it until the morning. I keep telling myself "tonight I'll get some good sleep", and I always end working late.

My cat has decided to get in the game, now. She usually comes and stretches herself out along my side and purrs when I go to bed. I think she's trying to tell me it's time to snooze. She's such a comfort.

Friday, June 10, 2011

Friday Nights

When I was a little girl, Friday nights were always a big deal. It's the one night of the week we would get to make popcorn, or go for ice cream, or even (if we were very lucky) order submarine sandwiches from Guy's Subs. Oooh, what a treat that was!

Without even meaning to, I think I've passed this on to my kids. When Friday night rolls around, it's always a little celebration. For us, it's often movie night with the kids and we'll watch something together. Sometimes we'll go out for dinner.

I still remember my Dad coming home and sitting in his chair taking off his shoes, and there all 5 of us were, whispering amongst ourselves trying to decide if we dared ask for subs, or go for the popcorn. My Dad knew exactly what we were up to, but he'd play along and just laugh or have a 'debate' with us to see if we REALLY wanted to get a treat? Were we SURE? Great memory. I miss my Dad.

Tonight my kids are down cellar with their cousin watching a movie with David. I'm headed down there myself very soon. They're having a great time (I hear lots of conversation and laughs) and spending time just being together. I think this is one family tradition most definitely worth keeping.

Wednesday, June 8, 2011


Has it really been a month since my last post? Wow. Time does have a tendency to fly when you're really busy. It's been a bit crazier than usual around our house, lately. I guess it's just the summer months (finally) coming along. I find that more and more often, I'm just making plans.

It sounds so simple, doesn't it? Just making plans. Typically, your kids finish the school year amid shouts of joy, and then you sort of wait until late August to find some bargains on supplies and shoes. Of course, we all know my family seems to want to be the atypical poster child, so to speak.

At the pediatrician's today, plans were reviewed and made for Abigail to be able to continue receiving therapies over the summer break. Phone calls and emails have been rushing back and forth making plans for Jakob to have a smooth transition (never an easy task) out of school and in to summer. Yes, we actually have to plan this. See my link on Asperger Syndrome to learn more about autism and how difficult ANY changes can be.

I'm planning a garage sale to help offset the cost of having our basement finished and to get the tons of extra stuff we have OUT of the house (please come!). Plans are in the works for Kyle and Cassidy to attend Camp Invention, and for Jakob to attend a Culinary Camp in July. Camping as a family would be a nice plan once or twice this year. Boy Scouts are planning for their late July week-long trek into the wild. We're planning on attending the NDSC National Convention on Down syndrome again this year in San Antonio, TX in August. Cassidy and I are trying to plan a Girl Scout project for "recycling and recreating" over the summer. All the kids need appointments for new eye glasses and the dentist.

I'm sure there are more plans that need to be made, but for now I think I'm full up. Oh! I have also begun, and plan on continuing, to work with Abigail daily on speech/word flash cards. She seems to enjoy it and also seems to show some improvement. Go, girlie!

Meanwhile, I think it's time to plan another dose of Motrin for the headache that I most definitely did NOT plan for :) Somewhere in between all the phone calls and running about, I need to make time to use my massage certificate. Oh, how I am looking forward to planning THAT!

Friday, May 13, 2011

Count your blessings

I heard the song "Blessings" (by Laura Story) today on the way home and it moved me. That last verse is this:

Cause what if Your blessings come through raindrops
What if Your healing comes through tears
And what if a thousand sleepless nights
Are what it takes to know You’re near
What if my greatest disappointments
Or the aching of this life
Is the revealing of a greater thirst this world can’t satisfy
And what if trials of this life
The rain, the storms, the hardest nights
Are Your mercies in disguise

Wednesday, May 11, 2011


Time for some Wednesday philosophy. I don't know why it seems to hit me on Wednesdays.... maybe because it's mid-week and I need something to keep me going.

So, I was thinking about images. In Romeo and Juliet, he uses a mirror to check for her breath to see if she's living. Seeing no breath of vapor, he assumes she is dead and kills himself. Not that I'm in to Romeo and Juliet, I just think it's interesting that someone once pointed out that Romeo was foolish to rely on a reflected image, since it isn't reality, but just a vision. I like that.

So, is what we see every day in life real because it simply is, or because we believe what it is, or is it all just a reflection of our own experiences and mind set?

I know that how we view ourselves is often very different from how others view us. I've been told that I'm calm to work with (I'll take that as a compliment), I've been told that I'm nothing but a glorified secretary (rather derogatory, considering), I've been told that I always have it together (heh, heh, I have them fooled), and I've been told that I'm too passive (compared to what?).

Hmm. So which do I choose to believe? Which do people expect to be true? Which really IS true? Then there are times that it seems to depend on the day or mood of whoever I'm talking to. Oh, for crying out loud. Don't make it easier or anything, please. I just love confusion (yes! ...that was sarcasm). So I guess the question is how do I view myself? Well, I'm not going to tell you all my secrets, but suffice to say it's generally not the same way that I get feedback for.

I'm a woman who loves her family deeply and religiously. I try to be polite and courteous, but on the other hand I have little tolerance for willful stupidity, prejudice, or condescension. Polite does not equal stupid or unable, gentlemen. I've never thought that I needed to be aggressive to be effective. I don't often feel like I have it all together. I do a lot of paperwork and housework and general Mom-work for my kids.

I take pleasure in reading and crafting stuff and peeking at my childrens' faces when they sleep. I have a secret desire to go away for a week without my kids, if I could stand it that long. I have worries and fears and small triumphs just like anyone else. I've never been very socially adept and I've been accused of OCD and perfectionism (probably where Jakob gets his tendencies; sorry, kiddo!).

I've been called very bad names, and I've been overlooked and forgotten. No, literally. I am apparently quite forgettable. I've had 3 separate occasions at different Dr. offices where they stuck me in a room and forgot me. I had to go find someone to tell them I was still there and they apologized for forgetting me. Just 4 people remembered my birthday. I've been informed (since they think they know better, I guess) of what my opinions are by people who obviously do not know me, and haven't any true respect for me, and feel they have a right to tell me who and what I am.

I am not perfect. I've known that since I was quite young. I am, however, the woman my husband fell in love with (bless him!), and the mother of 4 glorious children. I search for my faith and I believe in a true friendship.

I guess the problem is, I look in the mirror and think I see what's real, but how can I trust that? Like Romeo, I'm putting faith in reflections. Oh, how I would love to turn my back on those images.

Sunday, May 8, 2011

Mother's Day

I'd like to wish all the great Moms out there a Happy Mother's Day. This morning my kids told me that since it was "my" day, I didn't have to work. The day then proceeded into reality ;)

After church we headed over to the pet store, since my poor kitty was out of food and hungry. The kids begged me for new fish, so I bought them two new fish to replace the two zombie fish that recently (finally) gave up the ghost. We call them zombie fish because Jakob has had them since he was 4 years old. With minimal and somewhat lackadaisical care, they've survived for the past eight years.

We then headed home, since our newly acquired pets wouldn't do well sitting in the hot vehicle if we were to finish running Mom's errands.... home so Mom could make lunch for herself & Abigail. Then I was asked what I wanted to do today. Well, I'd really, really like for the kids to clean their rooms, and to get started with sorting and ferrying things from the garage back down to the new shelves down cellar. I went out and started working on that. Good work, Mom.

I then got Abigail settled for nap and David took off with the older three while I painted what will be my craft table down cellar. It looks quite pretty, really. I then sorted through about 6 bins of "stuff" and organized it according to craft status, garage sale status, and decoration storage shelf status. I also got a whole bunch of games & toys down there to the shelves.

Then it was time to make dinner, but my wonderful husband got me some take-out from Applebees and the kids were thrilled to get Wendy's kids' meals. Yeah, Daddy! Then my fantastic kids gave me presents! I got a bag of dark chocolate peanut M&M's (oh, so sinfully yummy!) and a new table top sized waterfall (I've been wanting a new one) and a nice, big digital picture frame from David. Cassidy made me the sweetest card and decorated it beautifully.

Now, it's just about time to put a second coat of paint on my table. Cassidy asked why I didn't want to go out 'or something' for Mother's Day. I told her what I really, really wanted was to get stuff sorted and put away for the cellar.

I had a very productive, "you don't have to work today" work day. I got hugs & kisses from my kids and my husband. It was a great day.

(p.s.... the kids' rooms never did get cleaned, although Jakob brought all the laundry down for me.)

Thursday, April 28, 2011

Hissy Fits

When I mentioned wanting to have one the other day, Kyle wanted to know what a Hissy Fit was.

Well, have you ever seen a cat that's been startled or aggravated enough that they start doing that little dance on their toes, backing up as if they're on little bitty springs, switching from their left side to their right, switching their tail all over, and hissing and spitting? Yes? Well, there you go.

Lots of noise and complaining and posturing, but really not much substance. It seems to me that it's a cat's way of saying "darn it all, I don't want to!" or "no, that's not how it's supposed to happen!". That's pretty much how I've felt, lately. Not a pretty or encouraging sight, I know. Sometimes I just feel like hissing and spitting and growling and waving my hands in the air going "no! no! no!".

Of course, I'm not allowed to do that, since I'm a Mom. We won't even begin to go into how silly it would look if I did, and how utterly ineffectual it would be any way. However, sometimes just the secret wish of doing so is a stress reliever, and makes me laugh because I think of my cat doing her little toe-dance that looks so funny. Once you can laugh, it's easier to let go of all the frustrations that build up.

I think I could use a good laugh about now. I think I'll go have myself a little hissy fit :)

Wednesday, April 20, 2011


With all of the drywall sanding going on in my basement today, I've had a chance to make a few observations.

First, the dust never really settles, does it? It just moseys about, looking for a new home on which to rest. Despite the vacuuming, and fans, and dusting, and wiping, something always remains. How true for events in our lives, too. We probably don't even realize how much residual "dust" will be with us for the rest of our lives, from events and projects that we've completed. I suppose this could be good, so that we never forget and can learn, or bad, if it was a negative experience.

Second, dust is something you push around and sweep away, but if you get too much of it, it chokes you. There's a metaphor for you. Think about it.

Third, dust changes the way you look. The contractor came up for a break looking like a cartoon character that had fallen into a flour bin. Does this mean he's been changed by the dust, or just hidden from view for a while?

Last, in the most practical and mundane sense, dust means that the project is almost over! Once you get to the dusty part, it's the beginning of the end. The light is at the end of the tunnel, even if it still is a little bit diffuse.

The good news is, the dust will always (sort of) settle.

Saturday, April 16, 2011

Cards and Carpets

Today was an eventful day. First off, my husband (drum roll please....) let me sleep in until 10:00 am! That is SO very rare for me. Abigail was up last night at 1:30 and again at 6:00. I'm not sure why. She cried a bit, then settled back to sleep.

After I finally got out of bed and dressed, we loaded the kids in the van for a family shopping trip. We ran a few work errands, then off we went to select color sample cards (we needed these to pick out everything to match!), outlet covers, carpeting, and a couch for the basement, despite the kids' complaints of starvation (yes, we fed them- Wendy's- and they survived). We found the perfect carpet to match our color cards.

Now, we have to hurry up and wait for the carpet order and to pick up the couch. At least we have the color cards to show the contractor so he can paint the walls. It will be SO nice when the basement is finished, and all of our stuff has a place, and we weed out lots more stuff, and I have a decent work area.

The anticipation is killing me ;)

Saturday, April 9, 2011

Little Things

Another hectic week over, another about to begin. Already the calendar is filling with work tasks, school meetings, appointments, and chores. It's what I do :)

Today I took the older 3 swimming at the Y. They had tons of fun, and I found myself enjoying it quite a bit, as well. It's music to my ears to still hear "play with me, Mom!". I figure I'd better do so while they're still interested in paying attention to Mom. My legs are soooo tired from dragging them around the pool, playing 'fetch' with the water toys, and racing. I don't mind. It's a good kind of sore, knowing every moment of effort was worth it.

I did get in my therapy exercises, too, which is a big bonus. My knee has been giving me trouble again and I find being in the pool really helps.

At school and home, we've been pushing Abigail (more than usual) to SAY things when she signs them. Happily, she's trying to do so and it's really very cute. On of my favorites is she now points to things and says "lookit dat!". When you thank her for something, she takes a bow. Such a sweet pea.

Jakob has coined many phrases over the years that we now use in our household. The Blues Clues notebook is known to us as the "mip mop". Doors that open when you get near them are "automagic", and we have Easter "bastiks". Believe it or not, he still uses "amn't" as the contraction for "I'm not".

Kyle's big thing is nicknames. He's got about 30 of them, now. He collects them. He loves to try and think of all of them. He's just a lovable kid, and a bit of a goofball. Gotta love him.

Cassie is still known (and I'm sure always will be) by her Bear Bear. Ah, Bear Bear. What in the world would our lives be like without you? Cassie's best buddy, confidant, and moral support. She still rides in Cassie's back pack every day "just in case, Mom".

I love them all.... these little things that make up the big things that become who they are.

Thursday, April 7, 2011

Cloak of Patience

As I was flipping through radio channels in the van, I heard an interesting snidbit about putting on your "cloak of patience" when dealing with people. I thought that was a very nice thought. Patience, courtesy, and kindness will most often get you through dealing with people. Is this supposed to apply only to me, toward others?

As I thought more about this, I thought that perhaps it would also be a good idea to put on my cloak of patience when dealing with myself. I so often have no patience with my own little foibles and faults. Maybe that's why I feel so stressed out sometimes. I want to be able to fix it, and fix it NOW.

It's very easy to say, but very difficult to do, especially when "things" seem to be just piling up and up and up all around me. I've been frustrated so often this past month with Abigail's health that I just want to bury myself in bed. I've been trying to focus on all the other things I need to get done; aggravated with working things out with the schools (that's multiple... CSE and CPSE issues), harried running back and forth between schools and stores and appointments, and feeling impatient with myself for feeling generally run down and under the weather.

Oh, Lord, help me weave my cloak of patience, not only toward others, but for myself. Amen.

Monday, April 4, 2011

A Never Ending Story

Abigail has finally been feeling better.  She's back to eating and making messy diapers.  Who knew I'd ever be pleased to type that sentence?!  Of course, it doesn't end there.  For the last 2 nights Abigail signs "ouch" and points to her ear and cries.  Today I was going to call the pediatrician to have it checked out.  Sure enough, just before I called, Abigail got herself into more trouble.

Grama was sorting a laundry pile I'd brought downstairs.  Abigail apparently jumped into the laundry pile (as she is wont to do).  Unfortunately, that's right when Grama took a step backwards and stepped right on Abbie's left elbow.  Abbie didn't cry at first.  She kept frowning at Grama and pointing to her shoe, then her arm, then fussing.  Poor Grama felt SOOO bad.

Of course, the pediatrician took a look at the elbow the same time she took a look at the ears.  Abigail has another double ear infection and is back on Augmentin again.  Her elbow seems ok; some soft tissue damage but the joint & bones seem fine.  She's a little bruised and puffy, there.  The Doc. gave us some topical pain cream and suggested Motrin or Tylenol, which she's taking anyway for her ear pain. *sigh*  Maybe tonight she'll be able to sleep, with the antibiotics and pain meds.

Meanwhile, I contacted the school about Abbie receiving Music Therapy.  Her evaluation was in December, and still nothing.  When I finally got a response from the school, they told me they never received a report.  For heaven's sake, people.  Why do I sign these papers saying you can communicate with each other when you don't?!  I ran that form over to the school and signed the necessary paperwork for an amendment to her IEP.  I also rescheduled her appointment to get her pre-op and ear tubes.  First opening is the first week of May.

Once that was done, it was off to the post office to get some work mail out.  As I ran about, the contractors began work in my basement :)  Oh, happy day!  The walls were scraped, bleached, and dri-locked.  The shelving was removed and miscellaneous, useless boards taken out of the wall.  Then they transported a bunch of wood through one of the basement windows.  I love the smell of cut wood.  It reminds me of my Dad and his workshop.  Good memories.  The basement looks so much better already.  I'm going to take pictures every evening to track their progress, just because it's fun to do.  At least this project has an end in sight.

I cheated tonight and had David pick up a roast chicken for dinner from the store.  It was yummy, but mine ended up being a bit chilly, as I had some work things to take care of first.  I just popped it in the micro for a minute and it was warm enough.  Time to have a cup of tea and think about going to bed.  Tomorrow promises to be another busy chapter in our never ending story.

Friday, April 1, 2011

Got the "Severe" Blues

Today I had a nice conversation with Abigail's Speech Therapist.  For the last few years, we have requested that her ST be increased.  After all, she's now almost 4 1/2 and she's not talking.  True, she's made some progress and says a few words, but really....she's 4 1/2!

So, the ST wanted to make sure I wasn't upset or surprised when I read in her report that she's is extremely severely delayed in speech.  I knew that.  I also know that in order to continue services, the therapists have to show a certain percentage of delay or significant deficit. 

Well, Abigail's got that for sure.  She falls in the 1-2 percentile.  Yes, 1 to 2.  Maybe they can finally get her ST increased?  As a parent, I understand and accept that intellectually.  As a parent, that also breaks my heart.  It's obvious she can understand what you're saying, and can communicate via sign, gesture, and body language and the occasional word.

However, I need for her to be speaking before she starts Kindergarten.  I need for her to be able to express herself.  I need for her to be able to demonstrate her comprehension in a way that the greater bulk of people she meets will understand.  I need reassurance.  I need faith.  I need sleep.  I need "the peace that passes human understanding", and right now it's eluding me.  I need to just hold my beautiful, amazing daughter that can't talk, and tell her how much I adore her.  I wish she were still tiny so I could scoop her out of her crib and just hold her all night long.

Thursday, March 31, 2011

It Creeps Up On You

Have you ever had one of those days, when you just need to step back, turn away, and gather yourself together?

I don't mean just the every day stressful, run-of-the-mill frustrations that occur with kids and appointments and work issues.  I mean one of those days that you simply seem to 'turn off'?  I don't seem to have any control over it, either.  It's like I have an internal switch that's been flipped.  I can't even bring myself to care.

Stress.  There's another whole issue.  So why is it that I chose to give up chocolate for Lent?  I found myself reaching for the M&M's much too often, whenever I was feeling upset. I wanted to give up something meaningful to prove to myself that I CAN control my life.  The first few days were tough, but I find that I can now say no to any chocolate without any hesitation.  It feels good.  As an added bonus, I've lost 6 pounds :)  Overall, I'd say it's been a pretty good learning experience.

Here I sit, in a bubble of "I just don't care, today", amidst phone calls and emails about my kids that I need to handle.  Not the best place to be, but I guess this past month has finally caught up to me, and my mind decided that it's had enough and is taking a mini vacation.  Great... I just wish my body could go with it!  I'm also trying to figure out when I'll have time to squeeze in a massage.  I got a gift certificate and can't wait to use it.  The problem is, I'm too busy!  Now there's a catch-22 situation for you.  

Wednesday, March 30, 2011

March Madness

March has been a very long month, this year.  Abigail has had ongoing health issues for the past 6 weeks.  She was hospitalized for 7 days, and spent an additional 2 days overnight in the Pediatric Emergency Department.  On top of that, a stomach bug has been passing through the family.  First Abbie (thus her second visit to the E.D. for dehydration), then me, then David, and now Cassidy is recovering.

Please, oh, please let March end and usher in a peaceful and healthy April with no "April Fools" joking about it.  I mean it, now.  No more sickness!

I've decided to make my New Years resolutions.  Yes, I know.  I'm a little late... well, ok... a LOT late... but better late than never, right?  Here goes...

1.  Be kinder to myself by taking better care of my body. 
2.  Accept that there are some people who will disapprove of me no matter what I do or say, and this is not my fault, nor am I responsible for their feelings.
3.  I work to the best of my ability, and often much more than I should.  I need to learn to say "no" to those that would make me feel inadequate.
4.  De-cluttering would soothe my soul.  We have SO much stuff that's unneeded.  Anyone care to come and browse?  I'm going to pick a weekend and drag out things unwanted and unused. 
5.  Visit the library more often, both to borrow books... and to return them on time :)  

Ok, those are pretty much the basics. 

Friday, March 4, 2011

Preteen Philosophy

My kids are a never-ending source of inspiration for me.  Jakob, especially, always makes me think.  Just when we're going along in our every day pattern of life (you know... time to wake up; time to get dressed; time to brush your teeth; time to pack your lunch; time to get on the bus; time to come home; time for dinner; time for showers; time for homework; time for bed; whew!  another day...)  Jakob comes up to me and just soothes my soul.

He's quite a little philosopher and is fond of asking me questions like "Mom, if a fly is on a plane, is it really flying?" and "Mom, is a moving conveyor belt redundant?".  Jakob has a great sense of humor.  I think that it's sometimes his saving grace, socially speaking.  Many children with Autism just can't recognize or identify social cues properly.  What to us might be obvious (for instance, someone is upset or uncomfortable with a topic) just sort of slides by their perception.  This can create a rather large rift and set them apart from their class mates.

Everywhere we go, however, kids will come up and get right in front of Jakob, since they want to know they have his attention, and give a wave and a "hi, Jake!".  He rarely knows their names.  Think of the absent-minded professor.  He can give a dissertation on string theory but he can't remember to comb his hair or tie his shoes each day, much less remember names of individuals.  Teachers and his counselor have told me that his sense of humor has gone a long way toward "humanizing" him to his classmates.  When he has a meltdown, he'll often come back to apologize and makes a joke about it.  He knows how to use some light sarcasm for joking around, too.  He understands word play and uses it to great advantage.  This gets his classmates chuckling and sort of gives them a connection to Jakob.

I could write books about it, but suffice to say... I like my kid.  I love him, yes, I adore him as I adore all of my children; but I really like him, too.  He's smart, he's funny, he's caring, he's respectful... he's a great kid.  I just wish other people could get to know him so that they could see beyond the one meltdown he has the first time they meet him.  He's quirky, he can be exasperating, he can be utterly exhausting, and he's just a joy to know.

I enjoy our little philosophical conversations.  One of my all-time favorites is "in the forest of perspective, things are just a matter of opinion".  Jakob, you light my life :)

Friday, February 25, 2011

My Least Favorite Job

As a parent, my least favorite job has got to be potty training, hands down.  Jakob took about 6 months.  In retrospect, some of his issues I'm sure had to do with his having Autism.  As a first time parent, it was simply a small sample of, well, a very hot and unpleasant place.  The twins were pretty good to me.  One day I put gates up around the kitchen, put two potty chairs on the floor and told them if they wanted their toys they had to learn to go potty.  They were done, bar an occasional accident overnight, that day.  Abigail has now started this job for me.  If she's somewhere in the middle of the other two potty training sessions, I'll be content. I try to see the humor in things, so here's a little snippet for you.

After taking Abigail upstairs for a nap, it was quiet for about 15 minutes.  Then I hear "Momom!  Momom!", and some fussing.  Now, since Abigail rarely fusses I always check, since it's likely that something is bugging her.  Sometimes the kitten has sneaked into her room.  Sometimes she's missing her teddy bear.  Sometimes she's gotten her hair stuck in a button or something.

Today I open her door to a truly interesting sight; Abigail standing without a stitch of clothes on, signing "potty!".   I scooped her up out of the crib and dashed into the bathroom and set her on the toilet.  Her crib sheet was damp, but not too bad.  I didn't want her to see me laugh, because I don't want her to think that it's a good thing to disrobe and take her diaper off and parade around while she wets.

On the other hand, it was pretty funny.  I cleaned her up and put fresh diaper and clothes on once she was finished and she's up there napping (lucky girl!).  The good news is, she's wanting to use the potty.  The bad news is, I think I'll be changing a lot of sheets.  Small price to pay, in the long run, for an end to diapers :)

Wednesday, February 23, 2011

Power Reflection

This morning/afternoon, our power went out.  It turns out the entire west side grid of Monroe county went out.  Oopsy doodles, Mr. Power Company.  Happily, the power returned just as our sump pump was reaching critical bail-out levels.  My work computer even came back up with no issues.  Oh, happy day.

This got me thinking about power.  Yup, power.  All kinds of power.  We rely on power to run our lives, but I think we lose sight of the power we have ourselves.  The lights went out, no television, no computer, no Wii, and the kids said "cool!" and went upstairs where there are windows to light their rooms, and played.  You would think it was a holiday.

Abigail and I sat in her room, playing with her lego table.  It has dinosaurs, and Winnie the Pooh, and trees, and trains, and clowns, and all kinds of fun things mixed all together from the lego sets we've purchased over the years.  The other 3 poked their heads in to ask "can we come in?".  Sure!  Before long, I had to move out of the room because I had all 4 kids in the smallest bedroom, laughing and having a blast because the power went down.  Who knew that Winnie the Pooh loves riding a dinosaur?

Now, the strange thing is, it made me think that the power really went up. The kids were animated and active and playful and creative and we were all having a blast together.  David called on my cell phone to let me know the power should be back up soon.  Bummer.

We all have the power to create what we live.  We can create stress, we can give our power away to others by letting them tromp all over us, we can make a relatively small debate into a huge production, we can decide to see beauty instead of focusing on the negatives around us.  We forget that, I think.  We forget to think positively, act compassionately, and respect ourselves for the power we really have.  It seems to get lost in every day life.  Appointments, kids, activities, doctor visits, work to be done... it never ends because that's our life... but... I'm going to try and remember to exert my own power more often to make a more positive life experience; not just for me, but for my spouse and my kids, to.

I find myself looking forward to the next power outage ;)

Saturday, February 19, 2011

A day in the life

Finally... my updated blog that I've been planning for just ages :)  For those of you who aren't familiar with our craziness, here are the basics:  David and I have known each other for 27 years, and been married for 17 of those.  We dated 18 months before getting married.  We have four gorgeous kids that keep us very busy.    The doctors don't know why we didn't seem able to conceive for upwards of 3 years, for no apparent reason. Following many medical procedures (that all failed), and frustrations, and finally prayers (should have tried this first, I know!) we were truly blessed.

Our first miracle was our son Jakob, who will be turning 13 this year.  I shouldn't be, but I'm always amazed at how fast time is flying by.  Jakob has "high functioning autism".  He's a brilliant, engaging, lovable, energetic young man who has changed our lives so much.  He continues to teach us so much, not just about all of the subjects he loves to read about, but about acceptance and, mostly, patience.

Our next miraculous journey was the arrival of our twins, Kyle and Cassidy Mae when Jakob was just 19 months old.  No, we didn't expect twins.  We certainly didn't expect to have children again so quickly (the doctors seemed to think we'd have trouble conceiving again).  No, twins don't run in our family.  We just got lucky :)  They just turned 11 last month, and are truly amazing kids.  Kyle has an intolerance to corn and all products derived from corn.  Just a little ongoing issue to add to our busy lives that we discovered when he was 4.  Cassidy Mae is a true gemstone and lights all of our lives.  She's sweet, caring, very smart, and growing up way too fast.

Finally, along came our youngest daughter Abigail Rose when the twins were 7 and Jakob was 8.  She was a most unexpected blessing.  Abigail has Down syndrome and the greatest giggle you've ever heard.  She's doing very well and beginning to talk.  She had open heart bypass surgery at 5 1/2 months to repair a PDA, ASD, and VSD.  She blew the doctors (and us!) away when she came home just 4 days after surgery.  No, she is not always happy.  Yes, she loves to laugh.  No, she is not afflicted or suffering.  Yes, we all love her dearly and she has changed all of our lives for the better.

I work at being a better Mom, and I work out of our home for the Flower City Down Syndrome Network half-time.  I love to read, I enjoy writing, I like to crochet and sew, I experiment with cooking (corn-free for Kyle!), and I wish to be a better gardener than I am.  Welcome to my blog.