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Tuesday, May 31, 2011


Is the day we start Alexander's Auction.  I'm actually going to post more on that later today, but this morning I wanted to take a minute to share a little more about the evolution of this blog.  I know that tomorrow we may 'round another corner (like we did when we began our quest for a Alexander's seizure dog) and more people may come to hear our family's story.  I wanted to take a minute today to explain what this blog means to me. Right now.

Tomorrow may change it.  Tomorrow may change me.  This past year has changed me.  The past 3 years have changed me.  The past 5 years have changed me.

5 years ago I was single (getting ready to be married...) and I was a wild child. I was the first to a social gathering and often the last to leave (or the one who spent the night.) I did random crazy things, like leave for the Jersey Shore at 11pm at night or meet friends in Atlantic City for 5 hours when the drive was a total 7 hours.  Irresponsible. Selfish. Giving. A workaholic (planning trips to take students to Washington D.C. or NYC) .... Then I settled a little. Became a little more responsible. A little less selfish and at the same time a little more selective about my giving.  I began to give to people who needed help more and less to people who just wanted something.

3 years ago I was not yet a mother.  My husband and I were selfish together.  We took vacations, we had friends over all the time, we were careless together.  We also matured together - or, well, he helped me mature.  But we very much took advantage of this time we had together without children.

1 year ago I was the parent of twins, but not a baby with special needs.  We were giving to our children. We were confident.  We were  carefree and "stressed" at the same time. I began to  realize the true joy of giving unselfishly to my children.  I began to understand the importance of raising good people to go into the world.

There were days in the last year where I wondered if I would smile again. (Those days were a long time ago).  I remember asking my husband if the twins would ever know who their "real" mother was.  I remember wondering if I had changed so much I would never change back.  And the answer is "Yes" and "No."  Yes - I have changed and will probably never be the exact same as before.  No - I don't believe the twins will "never know who their real mother is." I'm real. I'm happy. I'm ok.

Next week could, in fact, change all that.  We never know.  I will cling to my happiness today.  I will write about my happiness today. When my children are grown - they can look back and read about our happiness today.  They can also read about my love for them.  If they remember their childhood as a time of therapy or doctor visits, they can see my incredible love for them was much more a part of our lives. 

Each day we are changing.  The events that change us can be large (wedding, birth, etc) or just small things that help shape you each day.  Next year I will be different than today.  This piece of me ... is here .... for myself to remember, for my kids to remember, for us all to remember. 

Tomorrow Alexander's auction will hopefully bring a lot of people who are interested in the generously donated gifts.  Hopefully, people will be excited about these things. The possibility exists - that this blog (and myself) will be change by this.  I wanted today to record how important this blog has been for me.  I look back on the posts and I see real fears, real concerns, and real joys.  Our real life.  And my heart is happy.

Monday, May 30, 2011

The letter to the Military Family

Dear American Soldier,
Thank you.
Thank you for the time you spend away.
Thank you for the long hours you put in.
Thank you for putting my family first.
When people think of the sacrifices made by a soldier, they usually think of the ultimate sacrifice.
You make sacrifices every day. 
You sacrifice precious time with your family so my family can be protected together.
You give up witnessing those first steps.
You give up birthday parties.
You give up special celebrations.
And you do it graciously....
Your strength is the heart of our country.
Thank you.

Dear American Soldier's Wife,
Photo taken by Kathleen Amelia - Photographer
Thank you.
Thank you for being Mommy and Daddy.
Thank you for putting your dreams on hold as you move from place to place.
Thank you for supporting your husband without complaint so that he can support my family.
Thank you for being the backbone of our defense.
Thank you for substituting a Skype date or photo for a hug or bedtime kiss.
You sacrifice also.  I appreciate your sacrifices.
And you do it so graciously...
Your strength is the heart of our country.
Thank you.

Sunday, May 29, 2011


Do you remember when every small town had a fair? (Does that thought bring a smile to your face?)
Do you remember the single Ferris Wheel and one or two other kiddie rides? (How about now? Smiling?)
Do you remember the specialty "town" burger, snow cones, homemade ice cream, and funnel cakes? (I know you are smiling now.)
Do you remember putting down a quarter to spin for a fruit basket? Or playing bingo on picnic tables? Or the dime pitch? Where you aimed for the coolest glass in the tower of glasses?
All the while... country or bluegrass music is playing from the band on a real bandstand ... while families sit in lawn chairs or on blankets listening.

I'm not talking about the big circuses that come to town one or two weeks a year, I'm talking about the small town festival that takes you less than 3 minutes to walk the "lap."

These places have all but disappeared, except in the small town where I grew up.  Tonight, we took the kids there - and it was heaven.  Everyone knows everyone at this fair, so Alexander was passed from "mother" to "mother" ... some of these women are people I've grown up with but have never had the chance to meet him.  I was able to leave Alexander for some special loving and come back and he was being loved on by someone else.  Only in this small slice of paradise can you walk away from your baby and know he is going to be loved until you get back.

Andrew and Addison were in their complete glory.  They knew over 1/2 the people there, so they had a little free reign to run.  With Ray and I able to give extra attention to where the kids were headed... so they could be the leaders instead of the followers.

They were able to touch the polished-to-a-shine fire trucks.  They rode the 2 kiddie rides (one is actually started the same way you start a merry-go-round... but giving it a big push.

 They rode on the train and rang the bell.  And we rode the Ferris Wheel.  This town, this festival, this Ferris Wheel has so many memories for me that the twins rode it when they were only 6 months old.  The ride at 6 months was for me... and for sweet pictures when they are older.  The ride tonight was for them, and they loved it.
Andrew and Addison - 6 months old

Tonight, at one point - I went to get us all something to drink.  Inside the drink booth sat the same 4 people who have sat there for years.  My heart smiled.  Some parts of America have not changed so much. Nostalgia.....

Saturday, May 28, 2011

It's what you do when no one is looking.

Questions: You go to McDonald's and give the cashier a $5.00 bill and they give you a $10.00 bill in return.  Do you walk away? And is this stealing?  These are some of the moral questions people have to answer all the time.  Often the answer is, "It depends..."  or "If I don't notice until I get home ... then it is ok." or "It is the cashier's fault, not mine."

In the defense of humanity, sometimes the answer is an immediate, "Yes!"

Character is what you do when no one is looking. 

What if you ordered something online and they shipped you an extra by mistake? Would you keep it? Say, "Learn your lesson for next time?"

Character is what you do when no one is looking.

What if you ordered 9 cans of formula from your medical supply company and they made a mistake and sent you 9 cases?  And what if these cans were nicknamed "liquid gold" because a case can run from $200 - $400.  And it didn't cost you anything?

Character is what you do when no one is looking.

Tuesday I will call the medical supply company and tell them of their mistake. (Monday is a holiday). It is going to be a hassle.  There is the possibility that our prescription will be messed up. There is the possibility that our supplies will not be correct for next month.  There is the possibility that our supplies will be shipped later due to the change. Oh... and I'm giving the government (who pays for our supplies) about $2,000 back.

Character is what you do when no one is looking.

I didn't have to write this blog. I didn't have to share with anyone their mistake. But ~ I would know. And these are not the values I want to pass down to my kids... that you take and take and take until you can't take anymore.  We get more than enough ~ we don't need to steal. 

Character is what you do when no one is looking.....

Friday, May 27, 2011

So Tiny

Good friends of ours just had a baby. I can not begin to tell you how overjoyed I am for them.  They are just awesome people and GREAT parents.  Their beyond cute baby girl weighed 9lbs 9oz.  She is a chubber.  You know.... where the rolls just go and go and go.  We were gathered around looking at proud papa's pictures and I couldn't help but laugh at her little chubby cheeks.

This evening we've been playing in our favorite spot - the back yard.  The twins were happily digging in the dirt and I was enjoying some Alexander time.

 He is such a miracle... that makes me smile a huge smile for a tiny guy.  I snapped a few shots because sometimes I forget just how tiny he really is... 9lbs 8oz.
Alexander's tiny little feet.

When I hold his foot in my hand... then I can see how tiny he is

When my hand is put next to Alexander to give some perspective... again, you can really see how tiny he still is.

Trust me, in our world ~ tiny is nothing to be ashamed of.  Even on the Wolf Hirschhorn scale, Alexander is tiny... and he may always be.  But, so what?  We worry about seizures and things that could harm him.  We will not worry about tiny, because some things you cannot change.  We will embrace those things we can't change and focus our energies on those things we can change.  Besides ~ today he ate well. He also ate an entire french fry and a piece of chocolate.  And he took lessons on how to roast the perfect marshmallow right with the twins.  Here are my loves sitting around our backyard camp fire.
 Not my most flattering picture, but I take great pride in my marshmallow roasting skills!

What did we do on Friday nights before we had kids? Because my heart lies right here with these beauties and making great memories for them.

Alexander's Day Out...

Alexander is usually watched by a nurse.  She comes to our house and loves all over him. She is amazing - totally competent and a heart of gold.  She needed a little time this morning ... so Alexander is with my dad.
Who never changed my diaper.
Who never changed my brother's diaper.
I don't even know if he knows the difference between the front and the back of the diaper look like.
Oh ... and have I mentioned that now that Alexander "eats" a combination of easy-to-digest formula, difficult-to-digest Pediasure, and difficult-to-digest real food... sometimes the "outcome" is ... explosive.
So I brought a huge box of wipes for the just in case... and left them in my car.

No worries... Apparently Alexander is a big help in my dad's shop.  He just sent me a message that Alexander was completely worn out - using the hammer is a big job!

Pappy's Little Buddy....

Thursday, May 26, 2011

Marriage Rules.....

Addison says, "Mommy is a princess and Daddy
is a Doctor."  That girl cracks me up!
Oh.. the romance of it all.  The walking down the isle.  The flowers. The dress. The "I do's."  The dancing and partying afterward.  This is the day you dreamed about.  This is the day you have been planning since you were a kid.  Some of you have entire binders filled with ideas.  I knew I wanted a black and white and red roses wedding.  I knew what dress I wanted.  I had a totally rockin' wedding.  My bridesmaids took their dress ribbons and tied them around their heads and were "wedding ninja's."  It was laughter and dancing and .... everything I ever dreamed of.  It was a perfect day for a wedding. 

We went on our honeymoon.  We went to Barbados.... where the sand is white and the water is clear blue.  It was the vacation of a lifetime.  We surfed (no lie), we took a catamaran cruise, we had dinners that cost as much as 1 week's groceries.  We took a million pictures and savored every moment. 

We spent most of our day time on the beach ~ somewhere or another.  The romance of the island was everywhere.  We kissed and hugged and told each other how lucky we were to be together.

Ray even wrote our names in the sand....

And then we came home. A wedding is awesome, but it is only one day.  A honeymoon can be amazing, but it is only one week or so.  A true marriage is one where compromises are made and promises are kept.  My Mother and Father in Law are celebrating 40 years of marriage this summer.... they are a lesson in compromises. 

 Now, if only Ray and I could find a way to figure out the answer to this age old question....
Should the toilet paper roll from the top down, or the bottom up? 

Anyone want to weigh in?  What "real" marriage rules do you follow?  What "real" marriage rules do you ignore?

Wednesday, May 25, 2011

Pure Joy

You want to know what pure joy is?  Look at some children when the fun of summer has finally arrived.  I'm glad it's Wednesday because I can call it "Wordless Wednesday" ~ because there are so many great pictures from the pure joy of being outside.  Take a minute and smile along with my kids.

A Good Old Fashioned Tire Swing Still Rocks

Can you hear the giggles?  This one Ray lets Andrew crash into him... That child was beside himself with pure joy.

Not to be outdone... Addison takes a ride

We originally put Alexander in the regular wagon.  It was just too big for him, so we improvised....

The recipe for JOY could be complete, but if you add good friends and water ~ Icing on the Cake

Just Chillin' on a day that is this close to summertime.

Happy Wednesday everyone!  *Sigh* The week is almost over and a 3 day weekend is upon us!