Down Syndrome Walk of 2013

I love attending the walk for Down Syndrome and sometimes I feel like its more for me than for Eli or the kids. I love seeing the families, chatting with other moms, kids running around eating and playing and other cuties like Eli enjoying life. I'm always impressed with the kids who have DS that make the walk around diablo stadium. About three quarters of the way through a 7 year old boy was really dragging his feet. his dad asked if he wanted to stop but The little trooper insisted on continuing. So dad offered to give him hug and proceeded to carry him for a part of the way until the little guy felt up to finishing it. It's long for so many of them but somehow they inspire me in their efforts - they remind me that I can do hard things

Enjoying our ice cream! Blue Bell is the best!

Eli and I playing a little clapping game and dancing to the music. He was so happy that day, really getting into the music.

Eli learned how to drink from a straw! Jamba Juice is a great incentive.

Eli and I crossing the finish line!

Plenty of fun for the kids

We met up with plenty of friends, the Cox, the Larsens and the Frosts. Afterwards we went for dim sum.

While we were there Eli was really connecting with kent, talking, laughing and smiling. At one point he reached out to put his hand on Kent as if to say, "your the best Baba" and it warmed me to the soul.

I had to get Elias a shirt to celebrate and yes, he is totally rocking the extra chromosome!

I was so proud today of Elias during physical therapy. We worked on walking along the furniture and crawling up the stairs. He did it willingly for the entire 45 mins and when he got done you could see a little bit of trembling in his limbs from the exertion. I think he knew he did good, he was so happy and dare I say it, proud of himself. I'm sure to others they can't see any major accomplishment, but I can. It reminds me that we are all capable of much more than we think at times. Perhaps in the world's eyes its not much but we are all much more than we seem and what's more is that when we do it as a team we can make it through anything! Go Eli's Allies!

Community

It's late and I'm still awake, heaven knows its not because I'm not exhausted but my body seems to have adjusted to the later schedule I've been keeping. Darn those biorhythms! For the last 4 weeks I've been up late either prepping for Chinese cooking class or rolling spring rolls to raise funds for Sharing Down Syndrome of AZ. It's funny how I feel, a restlessness like I really ought to be doing something, or maybe the total relief that I won't have to look at, eat or smell another spring roll again. Actually I think it's a little of a sense of pride.

Parenthood makes you reach out, do and feel things you never thought you would. Classic example, the time I was thrilled when I managed to catch projectile vomit with my bare hands and save my carpet from a nasty stain that would have surely costed me my apartment deposit and much more! In that instance I literally reached out, did and felt something I'm pretty sure I never pictured just the year before. Well, I never pictured myself raising a child with special needs and having him has given me the courage to reach out for help, to advocate and work and in the process I love the connection I feel to a greater community. This fundraiser was just that for me. In the process my eyes were opened up to the wonder of people, their goodness and generosity that makes life beautiful!

We raised nearly $500 and our goal was only $300. I owe many thanks to dear friends who coached me on ideas that would be unique to me that I could offer in exchange for donations. I also owe these same friends for being my guinea pigs as I test out my first cooking class. You know who you are! 💕😊. I'm also grateful for the people at church, neighbors and at our preschool, Stepping stones, who bought, ate and ordered the spring rolls. A special thank you goes to Ms Michelle who had her business, Country Market, donate a generous sum. You guys are wonderful and I'm grateful to count you as friends!

I had better head to sleep so I can be fully present tomorrow at the walk. It'll be a celebration of not only my son Elias, but also of the greater community I call home! Love you all!

Bookclub is Therapy!

We celebrated the ten year anniversary of the Rogue Bookclub started by a some neat ladies in my congregation. I joined up after a few months into it and have been with them ever since. Even when we moved away for residency I kept up with the list of books and hungered for the thought provoking discussion I knew they would generate. With the passing years I've truly enjoyed the companion ships of these great women. New faces come and go, some have always been but no matter the changes they never fail to challenge my way of thinking or to open my mind to new ideas.

Bookclub is sacred, my life line to 'me'.... Simply put the Rogue Bookclub is the best thing EVER! I love you ladies!

Eli's Allies 2013

It's just 10 days away from the annual Buddy walk. Last years experience was overwhelming in so many ways. We were accompanied by wonderful friends, introduced to a massive support community and experienced so much of what makes having a child with DS a blessing. For those who missed last years post (see Eli's Allies) Sharing Down Syndrome of AZ was and still is my lifeline. There is a network of people who know the best doctors, or can give alternatives to dealing with certain medical situations as well as organize a wealth of activities for families to connect. I am so grateful for the organization and all that it does.

For this year we raised our fundraising goal to $300. I thought I'd attempt some fundraising activities so I hosted a few Chinese cooking classes as well as sold some spring rolls. It was fun in its own way because it was definatly out of my comfort zone but it gave me the opportunity to get to know some other people I wouldn't have gotten to know otherwise.

For those interested in donating our web page is http://www.sharingds.org/BWTeam/Details/503 . No amount is too small and it is greatly appreciated.

It's been nearly a year and a half since this little man came into our lives. We are ever grateful for all that he teaches and gives to us! We are Eli's allies! 😊

Stepping stones 2013

Keila started preschool! It's nice to have had a break from it all, but it was nice to come back to Stepping Stones and see all our friends we've missed. Keila is with Mrs Berniburg this year. It was apparent when I went to drop her off that she was comfortable with the whole routine. She walked in, put her backpack in a cubby, gave me a kiss and a hug goodbye and then went to wash her hands and sign in. Meanwhile all around us were new parents (both Mom and Dad) clicking away with the camera either cheering a teary eyed child or suppressing their own emotions as to how quickly little Bobby had grown up all unable to leave the room. I suppose I looked a little rather u feeling but she was more than ready and who am I to stand in the way of her growth!

Interestingly all the kids seem a little happier since returning to school. Is a great outlet for the older two and even Eli is finding encouragement in his physical development. Another bonus is that they are finally sleeping pass 6am! - it's tempting to make school year round!

Aubrey Ngai

Over Labor Day weekend we went to Las Vegas to meet the first niece on my side of the family- darling Aubrey Carole Ngai! Don't you just love her!

We spent a great deal of time with Becky's family and as always, her mom, Linda was the consummate host! The children played happily with toys and games and even got to feed ducks and fish. (of course Isaac fell in the pond twice!) When the rest of the family got there the pool party began and if we let him, Isaac would have lived in it permenantly!

On Sunday we attended the baby blessing and we back to Linda's for more great food once again. I'm grateful we had our 'second wife with us to capture some of these great shots.

It was a little strange to think back and realize that it had been nearly 4 days to the date that we were there for Becky and joes wedding. Linda keeps a lot of memory books floating about and I looked back on the pictures of that event surprised to see Keila as a 3 week old baby and Isaac witha little baby chubs. Now Isaac has thinned out and Leila's become a beautiful young lady and Elias has opined our little troop. Time passes much too quickly.

Unfortunately I was not as good to use the camera while we stayed at Brian and Kari hangs. Our kids bonded instantly with theirs and I wished I'd capture the images of them chasing each other around in circles, or the camping done in the closet witha glowing toy hamster as a fire. Isaac finally had some old enough friends who would play rounds of UNO or Mario with him and he had a compatriots with Logan in discussing all thing superheroes or Star Wars. Keila surprised me as well, she usually clings closer to me but in Julia she had the older sister she always wanted and in Sophia she was a willing silly and giggly companion. Damian, their youngest felt a little left behind but I have a feeling that when Eli gets a little older those two will be good buds.

As always we were feed around the clock and when the kids went to bed we stayed up playing games. This time around it was mahjong and kent had to take a picture of is great win. If we had betted with M&Ms he'd had made a profit of 128! Ah, the joys of Mormon gambling! ;)

We stayed a day longer than we intended but Isaac complained it wasn't enough time. We're hoping for to send spring break together.

It was a packed but wonderful 4 days. We need a few days to decompress, especially Eli, but preschool starts tomorrow so it'll be rough jump back but it was all worth it! Time with family and friends is priceless!

Annual Ward Campout

Kent took the two older kiddos on the annual ward campout a few weeks ago. It was all the two talked of for days and since Kent works late so often now it was a huge treat. The following accounts are in their own words.

Keila: I played with Baba. I, um, I did something special. I readied another book while baba and Isaac were sleeping. I saw a baby bug on the ground and Baba stopped it and then he put it in there- my bug catcher. I called him just Bug. I played with him while someone looked at him. He slept a little bit, he slept on a bebee bullet and I put some grass in the jar. He was a cutie- putie! He likes balloons. He said I'm going to find my family and then he go-ed. I smelled flowers. It was fun

Isaac: We got there and we set up our tent and unpack. It started getting dark and we still hadn't had our tent set up so we keep on working on it. And when it was finished then we head straight over to the campout and had s'mores. And then we played a little and we went to the tent and read stories and then go to bed. Then we got up and played for some time and eat breakfast and packed up and drove home. I played with Lincoln and Payton, that's all I played with. On the drive home we stopped at montezumas castle and then we drove home. And keila caught a bug, a baby ant. My favorite part was the glow stick and the s'more and .... Everything!

Kent's brief summary of his personal highlights: I got to head up with my oldest son and daughter for an enjoyable weekend. We read a book together by glow stick light. I enjoyed taking pictures of keila and Isaac and everyone else. I got to snuggle with both of them and got to see montezumas castle and learn a lot.