A friend like me...

Todd and I were told that it would be very unlikely to ever meet another child with Trisomy 12p.  Well, the odds must be in our favor because today, I did!  

Meet Brett, Drew and Laura Ketcham!

Unfortunately, Todd had to work today, but my mother and I were able to meet up with the Ketcham family in Atlanta at the home of Laura's parents.  (This was not Mother's first meeting with a Trisomy 12p family.  In September, while attending the UTC/Nebraska football game, Mother, my sister, brother-in-law and aunt were able to meet up with Kristin and Ellen Brown in Lincoln.)  How did I find these people?  FACEBOOK.  Of all of its many cons, one of its pros is the Trisomy 12P Parent Support Page.  That page has helped me to connect with numerous T12p families, but the families are all over the states and the world!  

I confess, when I first found the page, I was a silent stalker!  I never commented, but I looked at the photos and read the post, over and over!  Anything to give me some real insight to what the prognosis was going to look like in the future.  The paperwork we were given by doctors was full of medical jargon and research information that painted an ugly picture.  The FB page gave me exactly what I was looking for:  photos, not just statistics.  And Drew Ketcham caught my eye...I saw the blue-eyes, the blonde hair, the fair skin and I thought, that is what Laik is going to look like when he gets bigger.  

Long story, short:  I made up my mind that I wanted to meet the other families.  So, I sent messages, made phone calls, sent texts and emails, and today my first meeting happened.  I was anxious, nervous, and excited all at the same time.  Many thoughts crossed my mind, I was full of questions, but then I got there...

I had a bit of a directional issue (easy to do in ATL) which had me a bit flustered and LATE! But, once I pulled into the driveway, weight literally lifted off of my shoulders.  Laura and her parents greeted us.  It was like pulling up to family we hadn't seen in a while.  I never once felt uncomfortable or out of place.  We introduced ourselves, hugged and went in to meet Brett and Drew.  And we found ourselves chatting in a thousand directions.  We put the boys on the floor to interact and then we just enjoyed the company of another family like us.  Brett stated it best, "we don't have to apologize, you are like us!"

We had lunch, we talked about everything from church with a special needs child to potty training to Disney World to beach vacations to schools to wheelchairs and vehicles.  

Then I took out my camera and started snapping photos of the boys.  It was interesting to watch them interact and check each other out.  Drew demonstrated his walking skills, as well as, his pretty savvy wheelchair maneuvering skills!  

I found myself watching Drew's every move.  I was trying to mentally document everything about him so I could relay the information to Todd. It was exciting to see him communicate with his parents.  

Laura commented on behaviors that Laik exhibited that reminded her of things Drew did when he was younger. 

We swapped stories.  

We "snuggied" the boys A LOT!  I spent a precious few minutes on the sofa with Drew.  He crawled up beside me and was so sweet.  He then proceeded to take his shoes off, spin around, put his feet in my lap and get comfy.  My heart was melting! 

Laik showed off his best "if you're happy and you know it" claps!

And there was a lot of sweetness, with jibberish talk, that I would love to know the meaning!

It was a site to behold.  Two boys, 5 years apart, with T12p just hanging out.

Their expressions in these photos could tell a story....enjoy them, I know I did!

It goes like this:  

Drew:  "and that is exactly how it happened"

Laik:  "seriously, I can't believe it!"

Drew:  "man, that is hilarious"

Laik:  "don't tell everyone!"

Drew:  "you always say that..."

Laik:  "I know..."

I can hear those deep little voices saying, "I didn't do it!"

One happy boy!  He was sneaking his way to try to escape out the side door!

I love this picture!  It's like two friends, laughing and deciding when they will do this again!

It was a good, good day!  We hope to meet up again....at the beach!  

Laura and I agreed, "It is what it is!"  

Here's to making more connections and meeting more new friends...like us!

Easter

The bunny showed up and Laik really didn't know what to think...

....get this thing out of my bed!

That was Saturday morning....so then we headed to the zoo with our friends, Carter, Chapman (not pictured), and Parker....  Laik has decided he is tired, Parker is not going for this at all without his mommy and Carter is really wanting this to be a good picture!

After a full Saturday with our friends, finally Easter Sunday morning arrived.  Early, very early...we were at the Duck Pond for the sunrise service with Pastor Ben from Northside Presbyterian at 7:30 am.  Getting there that early, meant we better get a family photo....quickly, before our clothes were drink dribbled, food splashed, or slobber soaked!

The sunrise service was fabulous.  Then we moved on to the church for the Pancake Breakfast.  Laik was patiently waiting for our turn in the line!  

Then, it was time to put that Easter bucket into action and hunt some eggs!  

The hunt...

The slide was a nice resting spot....hunting eggs is hard work.  

Then, he spotted the cozy car.  The cozy car has become one of Laik's favorite riding toys.  At school, he pushes backward and then lifts his feet to roll down the slope!

One more family picture after the breakfast....it is far enough away that the dribble, splashes and slobber from the pancake breakfast cannot been seen.  And this was our best of the 10 taken. :o) 

I just love this one!  He looks like he is up to something....

Two precious boys!

After the worship service, we headed up the mountain to the Leffew's for Easter Lunch.  (Note: this is large meal #2 of the day!)  We snapped a shot of the annual rocking chair picture while at the farm.  (Check out the picture on the top right side of the blog to see just how much bigger Laik is this year!!!!)

Now, out of his church clothes and into play clothes for some swing time!

He loves to swing!  I love to see his blonde hair blowing in the wind!

After an afternoon with the Leffew gang, it was time to move on to the Russell gathering.  Might I add, that meant we would have Easter Dinner (large meal #3) with my side of the family at my sister's house! We had an egg hunt and then we decided to call it a day.  But, one last pic with Mommy!

The weekend was full of time with friends and family and worship!  

Easter Sunday....Jesus Christ is risen!  He is risen indeed!  

Happy Easter!  

Beach Thoughts

It is Spring Break...a time to head South and enjoy the sunshine and the ocean.  And we have, but today, a storm has settled into the Gulf.  I have been sitting on the back patio enjoying the sounds of the rain and it has made my thoughts go many places.  Laik is inside napping as I sit on a comfy outdoor loveseat with my feet propped up listening to the heavens rain down.  The rain is beating down on the tin roof of the house, the sky cracks and booms.  But still, ever so gently, I can hear the peacefulness of the fountain in the middle of the lake.  It calms me. This storm reminds me of my ever changing emotions.  

 

 There are days when it is easy, like a beautiful, sunny day having an ice cream in the park and hanging out with friends.  We do what everyone else does and life goes on.  Now, granted, it might take me a bit longer to do things (not sure if that is just me, mother of a 21 month old or if it because Laik isn't the typical 21 month old.)  But I do things with Laik just like other mothers do with their sons.  Or do I?  No, it is different.  People that are not around us a lot, most likely, do not get it.  I know that when I answer the question, "how old is he?"  People probably wonder why isn't that child walking? Holding his own bottle?  Drinking from a cup or straw? Feeding himself?  Talking?  and so on.  Oh well, it's my life.  It may not appear to be a sunny day, but it is.  I'm just doing what we do.

Then, there are rainy days.  The ones that just depress you.  Those days are often dreary and cold or hot and humid.  They make your hair look awful and your mood go sour.  The day is just ugly.  Everything is wet, beaten down, and lazy. It seems like it is never going to stop and it just sucks.  Like the fact that Laik isn't walking yet and I still have to carry him or stroll him everywhere.  Or being in the car and knowing he wants a drink or a snack and I just can't reach back and hand him one.  And not knowing when or if any of those developmental milestones will come?!? You get the picture, easy life is made a tad more difficult when it rains.

 So, I wait, I watch, I listen and I pray.  I have hope that in the moments of still, I can be full of joy.  I remind myself that all storms eventually pass. People confront storms in two ways:  they either go straight into it or they run!  I have survived many storms before this one and I have faith that I will survive the ones I face in the future. Laik, is my sunshine.  Trisomy 12p is my rain, but it isn't always a storm. It is sometimes a gentle splash in my face to keep me full of hope for a very bright future. Remember, the sun always shines the most beautifully and brightly following the storm!

 And shine on me, it does!  The beach is just a walk away, the lake, with its calming fountain, is just a few footsteps away, and my whole world of sunshine and rain is right in front of me.  If only, I could make my thoughts be as simple and happy as his....

Happy Spring Break from the Sunshine State!