Saying goodbye to summer in Long Beach!

Hard to believe one week ago today we were just heading off to Long Beach, In for a few days with Gramma Ellen and Grandpa George and now tomorrow I'll be walking Cameron into his first day of Kindergarten.

It was a truly wonderful, relaxing and beautiful week in Long Beach with great company that included many fine family members!

Grandpa George did a great job holding his title as Captain Adventure, growing up my father would take us on many "excursions" all memorable in their own way and some a bit off the wall which always led to a good story. So in typical fashion, Capt. Adventure schooled Connor in trying to trap and then play dodgeball with the beach seagulls as you will see below:

"So you take this crate and..."

Gramma Ellen was not to be left out of the fun as she took some pretty big risks letting their bird "Rodan" out of his cage on many occasions, much to the delight of the children, Connor in particular. Good news there was no dodge ball with Rodan, and after some time Connor and Rodan came to understand one another, despite the stick Connor was repeatedly poking at him. Cameron would squeal with delight anytime the bird flew around, it's amazing how children connect with animals.

Connor is holding the "stick" yet Rodan has decided to proceed with caution

Uncle Ed arrived a few days into our stay and he's likely thankful for this seeing as Connor, Cameron and Maureen busted into his room early one morning and jumped up and down on his bed. As I walked into this scene I felt really bad, and said so. Which Capt. Adventure piped up "Oh don't worry about it, I put the kids up to it".

The boys had a great time with all of the Conway family. While it took Cameron quite a while to fall into a routine every day, when he did feel comfortable he had a really good time. I imagine he'd say his favorites were playing "Build a Bear Workshop" with Maureen and swimming in the lake late in the day playing wipeout in the waves. All in all it was a great way to say goodbye to summer. The boys are already asking when we can go back...

Many, many thanks to the Conways and Hanleys for letting us share in the adventures

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Making Plans

I am by nature a planner, I re-write my to do list at least every other day and carry around 3 months worth of paper calendars to try and keep track of our therapy, school, doctor schedules.

Cameron has taught me you can't plan for everything and I'm trying to become better at learning how to handle the unknown, in some cases it's become easier to wrap my head around this concept.

For instance I realize that Cameron could suddenly become ill at any time, this fact does not keep us house bound or from enjoying life. It changes some things though, like planning family vacations away from the Children's Memorial area, it gives me pause to leave Cameron overnight without us.

It's hard to find a balance because as any parent needs time away from their children to recharge, many would say those parents of special needs children need it even more.

After all Cameron and Connor need healthy parents in every sense of the word. I'm working on the letting go part, but it's not easy and when question arise relative to Cameron's health and he seems more in limbo, it's really hard to break away.

On August 1st Cameron had another MRI to follow up post surgery, this was 6 weeks since the last one and a huge marker for us. As I sat in Dr. Bowman's office on August 1st taking her through some recent early onset symptoms of a problem for Cameron she showed me the MRI and we agreed it was stable. I shared with her my concerns to leave the Chicago area both with Cameron and without. She said "go, go now, don't look back just go while you can".

And so we did. We green lighted our plans to visit my family in Michigan, some of whom we have not seen in two plus years. One week later Matt and I took a trip sans kids, courtesy of Matt’s company trip (*KBM if you are reading, yes he still works at the contest factory). It was a great trip to Napa Valley all expenses paid, and being that we were engaged there 9 years ago it was a little extra special. Of course there was far more anxiety with this trip having Cameron & Connor not with us, but I am proud to say we did more than survive, we had a wonderful time.

If given the choice I'd always like to make plans well in advance, but I’ve just learned if you have to “green light” a trip with only days before departure, it’s ok. Maybe even better so the anticipation doesn’t build.

A few photos of our travels…

Cameron and his Great Grand Father (Baba) take a nap together .

Baba and 7 of his Great Grandchildren

The Resident FISH Connor!

A Trip to Greenfield Village