Guilt

Lately, I've been plagued by guilt. 

Am I doing enough for Matthew?  Should we put him in more therapy?  What about the speech focused school?  How in the world am I thinking of going to work full time?  How can I give everything to the kids and still be me?  Is there any new research on speech delay?  Should I be more structured in my play with Matthew?  Am I devoting too much time to Matthew in lieu of Jackson and Alyssa?  What if we devoted all of our resources to getting Matthew to speak and he still doesn't?  Will I always wonder 'what if' if we don't?

I wish I knew the answers to these questions and more.  I wish I could be confident that the decisions we are making now would net the best results, but I guess that is a wish of every parent.  I saw this posted on Facebook and thought it summed up some of my angst.  I guess I'm not the only one.

Not that I feel 'judged', but always happy to get a simple smile!

Thank you!

When people talk about luck, Darren and I usually slip each other a secret look.  We feel like we know a bit about luck and amazing odds-- we have the 1 in 7 billion kid.  His chromosome duplication is de novo, meaning that it didn't come from Darren or me, and that if he had been conceived moments earlier or moments later, he might not have his duplication.  Luck and amazing odds.

We also feel like we know a lot about luck because we have been so very lucky as we've navigated Matthew's journey. If we hadn't lived in Houston when he was born, we might not have received such a quick diagnosis or been tied in with such an amazing support team of doctors, nurses, and therapists for the past 4 years. If his GI hadn't by chance noticed his big heart in an xray of his intestines, Matthew would have likely succumed to heart failure.  If his craniofacial surgeon and team in the OR weren't unbelievably quick and amazing, he likely would have bled out during surgery.  We have been so lucky.

We know we are so very lucky to have the family and friends that we have, all of whom have been unbelievably supportive and caring during the past 4 plus years.  We can't even imagine what this journey would be like without each and every one.  Thank you!

Wedding Crasher

We found Matthew's nirvana-- a place where he can run, dance, and be loud and joyous-- a wedding reception.  I can't remember a time when Matthew was as happy as he was this past weekend at Uncle Will and Aunt Tiffany's wedding reception.  Pure happiness!  He needs to find some wedding receptions to crash! 

Messy and Incremental

At lunch the other day, one of our friends remarked that 'progress on the ground is messy and incremental'.  I nodded my head in agreement because that sums up our experience with Matthew so very well.  He has worked so hard for those 'little' moments.  I reveled in the progress the other day as I watched him eat a bowl of cereal, with milk, on his own.  That progress was messy and incremental, but look!

And I thought about it a little later as he climbed on the swing and wanted to be pushed as we waited for Jackson to get out of school.  This is the kid that struggled to sit on his own, that struggled to stand, and that struggled to walk.  The progress was messy and incremental, but look!

To the outsider, these images may look like just another moment in any other day.  For us, as we saw and experienced the messy, incremental progress day after day, moment after moment, these are amazing moments, the culmination of so much time and effort.  Happy day!

Big Green - Week 2

Remarkably, Jackson is still handling big green amazingly well!  I think I've had more woe-is-me moments than Jackson has had!

We traveled about 20 hours round trip to Mississippi last weekend and we pushed it a little too hard getting back (not stopping as often as we should have) but Jackson weathered it well overall. And it was totally worth it, as we had a fantastic time seeing family and adding Aunt Tiffany to our family!  (Congratulations to Uncle Will and Aunt Tiffany!)  The wedding was beautiful and the reception was tons of fun.  We are pretty sure Jackson was out on the dance floor more with the cast than he would have been without it. 

2 (plus) weeks down, 4 more to go!

Broke down and got a handicapped tag for Jackson,
not really because the distance,
but more for the extra space to get him and the wheelchair in and out.
I know it is justified, but still feels weird to use it.

Big Green- Week 1

So far, I've been amazed at how well Jackson has handled his monstrous cast.  For a kid that I used to call Eeyore (because of his not-so-sunny disposition), it is nothing short of phenomenal. I think he's handling it better than I would.  And for the rest of us, it is an inconvenience, but (1) we've endured much more and (2) when we have to pick him up, 95% of the time he hugs us and tells us he loves us.  Pretty great.

Anyway, today was our first follow up doctor's visit.  So far, so good.  The x-rays showed that the break is still in the right spot and just waiting for the healing!  Surgeon said it would be another 5 weeks in the cast, and then at least a walker for a few weeks, if not a brace too.  We'll know more at that next appointment in 5 weeks.

Yesterday, Jackson went to school just like always, save we now drive him and walk him into school. I chuckled this morning, telling Darren "nothing like an injured birdy to bring out the mothering instincts in the little girls".  Jackson was surrounded by classmates willing to help him this morning. It was so sweet.  As well, the art teacher offered to let Jackson be her helper when it is his PE day.  Also, very sweet. 

1 week (plus) down, 5 more to go.  I hope the next 5 go as smoothly!

Spring Break Moments

-Jackson went to Lego camp for Spring Break, with big green!  And after he spent 7 hours there each day, what did he do when he got home? He built with Legos.

-Matthew has been singing in the car to "What Does the Fox Say".  He has a few favorite songs that he approximates and I love each and every one...even "What Does the Fox Say".

-Alyssa wanted to go early to tutoring over Spring Break, so she could get more work done.  This is the academic girl I'm used to seeing.  She's been a little MIA this school year, but I'm glad to know that deep down, she's still in there!

-Matthew was completely put out there wasn't school during spring break.  He would frequently say "Iwannago" and sign "school".  When I told him there was no school this week, he would get pretty mad. 

-For the last several months, Matthew has been writing primarily with his right hand.  Spring Break, he decided to mix it up and start writing with his left.

-Alyssa, Matthew and I went to Cypress to visit friends at the end of Spring Break.  It was bitter sweet-- great to see good friends (and old teachers!) and catch up, but sad too in that we don't get to see them more often.  I kept reminding her (and me) how lucky we are that we have love in both places!