You knows it's going to be a long day...

You've got the kids on a 10:30 am nap drive. Here's wishing my two papers will magically write themselves tonight. Come on Great Pumpkin, you owe me one.

Homeward Bound

Riding shotgun in some poopy traffic- it's been slow going on our return from DC. A blissful getaway, the kids were true travel champs. As I mentioned before, yesterday was one for the record books. Today was a close second.

More family time, beautiful weather, and time spent exploring parts of a truly great city... A perfect ending to a splendid weekend. The munchkins have been passed out for hours now (remember this drive is taking way too long), and I'm quietly praying this sleep won't affect our bedtime routines tonight- especially since I will be flying solo. Looks like Jesse will be capping the weekend off with a work-call. And I've been silly and reading all the while the critters have been snoozing. Will I ever learn?

Oh, hello interstate 64. So nice to see you again. Wake the kiddies now or coast in quiet??? Whatever we do, we will have some great lasting memories. Mom & Dad, thanks for making this trip possible.

Little Man, Big City

We are DC tonight. Earlier today we cheered on Team Miles for Miles at the Best Buddies event. I couldn't think of a better, more fitting way to honor Disability Awareness Month.

Many more pictures to come; this day will be remembered as a favorite for many years to come.

One From the Road

Blogging for DS- my 31 for 21

Another year is slinking by, and I forgot to do the 31 for 21 campaign. I love that DS blogging parents remember this and share their stories. I'm so wrapped up with maintaining our ground troops that I forgot to type while in the trenches.

So I'm going to make a list of 31 ways Down syndrome has impacted my life. This will be my 31 for 21; Lord knows when I will resurface again. Here goes...

1. Celebrate daily. For example, last week was the first time Miles specifically asked for "mommy hugs." I've waited 3.5 years to hear that; you better believe that was celebrated here.

2. Miles will always be a person first- there should be no label before his name. Ever.

3. Fight for what you believe in.

4. Let go of those things you cannot change- or just telling yourself that until you forget it all together.

5. Start early. Education begins at birth. (I read Miles a Kurt Vonnegut book in its entirety on his second day alive... Explains a lot, I think.)

6. Sign language is amazing. Sign language unlocks doors and opens minds.

7. Music is universal- just ask our tiny Smokey Robinson fan.

8. Lead with your heart, hope with your head, and hold hands when the going gets tough. Thank God for Team Milestones!

9. Believe in the power of praise. All kids like positive feedback.

10. When the going gets rough, tag team it. Know when to tap out and collect yourself.

11. Laughter will see you through. Same for coffee. Add in Thomas the Tank Engine toys.

12. Flashcards!!!!

13. Every moment is a teachable moment- from the grocery store to the doctor's office.

14. My son is braver than I am at times. Scratch that- mist of the time.

15. Breathing should never be underrated.

16. Playing together, having fun, and laughing is the best way to bond- kids know when you genuinely enjoy your time together.

17. OTs, PTs, and speech therapists hung the moon.

18. Heart surgeons and PICU staffers are my heroes.

19. Doctors, in general, don't like me. However, nurses love my son.

20. Know your rights.

21. Know how to ask for help.

22. Know that it is not your fault.

23. Know that you have to be honest with yourself, acknowledge your feelings, and be willing to share them.

24. Foster independence.

25. Socialize and Enrich- just like rinse and repeat... Should be done daily.

26. Hug it out- know that you and your partner will be facing some pretty big challenges.

27. Do your research.

28. Brag whenever possible because good news is always worth sharing.

29. Don't be afraid to speak up or speak out.

30. "Life is full of surprises" is truer than I first believed.

31. Down syndrome is only a tiny fraction of my son's life. DS doesn't define him. DS doesn't restrict our family. It is merely the spring board for the greatest period of growth and learning in my life, and it is simply the starting point of my son's amazing life adventure. "It is not a problem. It's an opportunity," once said a wise granddad.

Well it happened...

I've become one of "those" parents, and I wouldn't have it any other way.

9 Months of Awesomeness

A Night for Writing

So I just penned "Miles's Story" to help support CDR.  I'll posting it below.  We are hoping it gets added to their website; this is an organization very near and dear to our hearts.  Read it and let me know what you think:

Miles’s Story

            From the moment he arrived, Miles has been a constant life force, a source of inspiration, and giver of true love in our family.  He spent the first two months of his life in the quiet comfort of status quo.  From delivery through several doctor’s appointments, Miles was the picture of health.  He was never fussy, always ready for snuggles, and was responding positively to our presence; basically, the arrival of our first child was typical and predictable.  All except for a slight snag, Miles had not developed a “social smile” by his two-month check-up.  It was at this time our pediatrician first mentioned the possible need for genetic testing, as a precautionary measure.  I remember leaving that appointment literally shaking; my world, my precious son, may not be as healthy as we first imagined.  Following the lab procedure, our family spent a breathless weekend anxiously awaiting the results.  During this time, my first Mother’s Day passed.  While we all put on brave faces to celebrate the special occasion, my heart was breaking inside as our son’s fate waited to be revealed. 

            By the time we learned of Miles’s condition, a translocation form of Down syndrome, we had prepared ourselves for the news.  Oddly enough, hearing the news was such a drastic relief for us.  We could now breath, collect ourselves, and seek out the best possible resources for our beautiful son.  Within the week of learning about Miles’s condition, I had contacted Child Development Resources.  Their response was immediate, as was their compassion for my family. 

            To be honest, the period of initial evaluation and IFSP development is a bit of a blur.  Not only were we coping with Miles’s recent diagnosis, we also learned very quickly that he had a profound congenital heart defect.  He was quickly scheduled for open-heart by-pass surgery.  Prior to that procedure, we were able to have a few sessions with Robin, Miles’s case manager and OT from CDR. We used that time to discuss what post-op accommodations would be needed, and, more importantly, we began to build the foundation for a wonderful partnership. 

            Miles sailed through the surgery like a true champion; he was much stronger and braver than the rest of us.  Following a few weeks of recovery, Miles resumed his work with Robin.  She was both an excellent therapist and an instructor, showing us how to best encourage Miles’s development and to reinforce her efforts.  In Miles, Robin saw and fostered his awaiting potential.  Over the next year, Wilda joined our team as Miles’s speech therapist.  Her patience and persistence was evident from day one.  Robin and Wilda will always be very important people in Miles’s life; their dedication and support are the driving force behind Miles’s current successes. 

            In addition to receiving direct services, Miles also attended a weekly CDR playgroup.  From hiding out in the ball pit to racing around the playground on splash days, Miles had many great friends (children and staff alike) during those visits.  We also made some great friends, too.  Watching him explore and develop in a truly supportive and nurturing environment was a gift for us.  Furthermore, CDR did an amazing job providing transitional supports for our family as Miles made the move from in-home services to attending a special education program in the public school setting.  While the transition workshop for parents was very helpful, watching Miles ride the CDR bus in preparation for the public school bus was the highlight of that time.  To this day, Miles’s favorite part of his school day is riding the bus, a fact we solely attribute to CDR.

            Time seems to be racing by now.  Miles has just entered his second year in the public school setting.  Not only is he getting bigger by the day, he is now a big brother.    His vocabulary is exploding, just as his command of his environment.  And rest assured dear friends at CDR, he is still blowing kisses.

            Aside from all of the support Miles received, I will always be indebted to the personal care that came my way.  Prior to Miles’s birth, I began my work as a special education teacher for the county.  All of my classes and training had only prepared me to be a teacher, not a parent.  Robin, Wilda, and countless of other CDR staffers helped me make the leap from professional to parent by entertaining my thousands of questions and providing gentle and continual encouragement.  Your support has helped me become the parent I am today.  Thank you from the bottom of my heart.