Recap of 2013

We come again to the close of another year! Here are the highlights of 2013:

Kent is ALL about management this last year! He moved from being the senior manager of the pharmacy department to the director and while it was a planned move, it was not expected for at least another year. His boss retired early and so with only a little over a years experience in management he moved on. It's been a steep learning curve for him with lots of growth but its also been difficult to balance with home life and personal progress. To make all of it a little more efficient, Kent decided to bike to work for a few days. He calculated it to be about a 17 mile ride which took him 80 mins. His energy was great and the limited daylight hours was incentive to get home earlier which made everyone at home happy but alas it is not a realistic ideal but he is glad to have found a new hobby. He also oversees the rental of our old house and the settling in of the new home. He has engineered his own mobile garden (a garden in boxes on wheels which can be used to maximize/minimize sunlight for year round gardening) which he hopes to get started in the spring and in the process had fun with a little wood working. He and the children made some wood Santa ornaments for the tree and they enjoyed it so much he hopes to do more.

Flo continues to find growth and joy in her role as a mother. In addition to the usual jobs of house cleaner, decorator (we bought a new home), taxi driver, teacher, mediator, cook ... (Perhaps it might be easier if the list were of things she didn't do!) she took on the challenge of fundraising for Sharing Down Syndrome of AZ. It was a labor intensive process but was gratified to see nearly $500 raised by September. She hopes to begin doing it year round by selling cute sugar scrubs and handmade soaps. She also visited Washington DC for the first time for a little R&R from her duties and was replenished by the experience to find a better sense of balance. Weight lifting and running have become part of the regular schedule again and it is the general consensus that a healthy Mama is a happy Mama!

Isaac began kindergarten this year and now has a wonderful outlet for all his enthusiasm and energy. Here he is with a family friend goofing off. He loves math and has begun to use his skills in understanding money, enough so that he budgeted and bought Christmas gifts for the family and a simple toy for himself. He was so proud to watch us open our gifts! During the summer Isaac joined the Bellair swim team. It took a lot of courage to dive let alone compete but it's been a powerful experience for him. He's grown to be quite the helper with Eli and the giggles between them tell us they'll be the best of buds as they grow up!

Keila has a charm of her own! She is very much an introvert but when she's comfortable can chatter a mile a minute in her adorable voice. A doctor once told me we ought to patent her voice because he found it so cute! One of the things she'll chatter on about are bugs, "the cute little fellas" and is a stanch protecter of them. she stands guard and shrieks at you if she should come close to stepping on them. She loves time with her Mama and especially spa time. She's already asked if she can use cucumber on her eyes the next time we do it! There's a bit of a love hate relationship between her and Eli but when a stranger comes along she is as protective of her baby brother as she is of bugs. Adule or child- you better watch out for her wrath if you mess with him!

Elias has grown much in this last year! He finally got some teeth in that little mouth of his and went from army crawling rapidly to crawling on his hands and knees. His physical therapist says he will be walking as soon as he gets the confidence to try on his own. He's taken quickly to sign language and can tell us word like: more, please, finished, wash hands, bath time, nap time, up, down, bye-bye and thank you. He LOVES music and has developed his own sign for it. Anytime he hears something he likes he begins to do what we fondly call, "the Bubby dance" by wiggling his little bottom and or swaying side to side. He insists on music while he does therapies and will stop in the middle of work to get his musical toy going again before he continues! We wonder if years down the road we'll see him in the center of a dance floor as the life of the party!

We are so grateful as a family for each other and the friends and family we find in our lives. Most of all we are grateful to The Lord and all the blessings He gives us daily. Happy New Year to you all and may His Spirit stay with us through into the new year! Welcome 2014!

Video Fun from the Carnival

So two posts ago I wrote about attending a Family Fun Carnival for Sharing Down Syndrome of AZ. I neglected to mention that I had the chance to meet up with an old friend I hadn't seen in 7 years. It was great to get caught up and have a way to keep in touch. He husband put together a video of the evening and I thought I'd share.

The event was hosted by the Paradise Valley Stake of the church of Jesus Christ of Latter-Day Saints and features one or two faces you might know!

Open Possibilities!

Up until recently I never thought much about Eli's future. To be honest I was too overwhelmed with doctors, appointments, navigating governement agencies and therapies to think much beyond it. Now that things have settled in a routine and Eli has begun to show us a little more of his own personality, I realize he will not always be a baby but someday a man. He will have his own dreams and hopes and I wondered how much it would be like his older siblings. Would he drive, go to college, get married? I know now that such hopes and dreams are within his reach. It will take longer just like all things have for him, but he can have the typical life despite his atypical genome. In fact I have a feeling he will appreciate all his life and accomplishments so much more because of his extra chromosome!

Those with Down syndrome are breaking down stereotypes all over the world. There are several who are actors and actresses, models,a business owner named Tim Harris in Albuquerque and the list will go one I'm sure. I'm grateful to these people for working so hard so others like them can see that the possibilities can be endless! Check out this article from Huffington Post to glimpse just a few!


After watching his sister color with the chalk, the little man decided to make his own mark on the world!

Fall Festival Fun!

It's holiday season again and one of the best parts of it is all the activities there are that allow us to connect up to other families who have loved ones with DS. The desert botanical garden hosted a Pumpking Harvest Festival during the week that Keila, Eli and I were able to attend. Keila loved the games and the petting zoo but especially the little baby pumpkins she picked out to take home. Eli tried out a game or two as well and took a mile curiosity to the animals. Mostly he enjoyed being held by me and interacting with other kids.

Greeting Gina! The little girl next to him is a match the mother in the background thought would be so fun for the future!

This shot makes me laugh, he would wave on his own to other children, mostly those who had DS as if to say, "Yo wasup my brother from another mother!"


This shot was with the help of CJ's mom, the young man next to me. He's ten and he went from major sensory issues (yes, even with sand) to loving it! His mom couldn't drag him away!




"Mom's busy, quick get the glasses off!"


During that same week there was a Carnival hosted by one of the stakes of the Church of Jesus Christ of Latter Day Saints. It was so fun to have the whole family there. We were amply feed between hot dogs, ice cream, cotton candy and candy apples. They even had fruit there and you better believe I stuffed them with as much as I could before allowing all those other goodies! The games were fun as we're the prizes.

Ice cream makes the world go 'round in our family! Especially Blue Bell!

Eli's personal favorite was the music. His favorite toys either play songs or its the keyboard. He always makes me smile as he sways and wiggles to the songs. It was no different here, the live band wasn't too loud and he happily danced with kent and I for most of the evening. There was plenty of participation and some very enthusiastic dances that night!



While at the activities Kent and I got to chat with other parents. It's a reminder to me how very blessed we are. We're blessed that aside from aspiration issues, Eli is an extremely healthy boy. Many of these others children had heart surgeries at four months and often more than one not to mention those who dealt with Lukemia. I love that I can glean ideas for helping along his development and sensory issues from experienced moms as well as cheer each other on when we can say, he's starting to walk! No matter our challenges we all love these children and the joy and perspective they bring. Success, patience and true strength are lessons we learn through these people and I wouldn't change them for the world!

Down Syndrome Awareness Month

So life has been a little crazy lately. Aside from recovering from the fundraising (note to self: start MUCH earlier next time!) and then teaching a cooking class for our church Super Saturday, I didn't have the time to dedicate posts on October being Down Syndrome Awareness Month. But it's always better late than never! For the next few days I hope to write more on this subject near and dear to my heart as well as give resources to any other parents to be of children with DS.

I love this article from babble.com entitled 21 Things People Don't Get About Kids With Down Syndrome. It's a quick read and best of all you see pictures of the most darling people!

Like this little cutie!

A New Love Baby!

So today was our annual super Saturday. It's a huge craft activity day we do at our church and I swear we have some of e most talented ladies on earth running it! All the crafts are only for the cost of materials and these gals donate their time and talents to create new things for us annual as well as prep the materials for our orders. I love that I can set aside time from kids and housework to creat, beautify and enjoy the companionship of other wonderful women!

This year they asked me to teach a Chinese basic Chinese cooking class. Thankfully the fundraising I'd been doing a few weeks back prepped me for it and desipte my anxiety all went fairly well.


I managed to finish most of my projects and just have a few bracelets to finish up. Not bad for a days labor!


I have to say my favorite was my afternoon class with a talented artist - Dina Wakley. She introduced many of us to one of her passions, art journaling. She's amazing and I've always loved how expressive and free her work is. She's published one book on it and is working on her second as well as does classes all over the world (literally!) to help other discover this form of art. I have to be honest and say that I was worried though that her talent would find a wall with me.


For anyone who knows me well I tend to over think things a lot! My frist attempts at scrap booking we painful, not just in the finished work but all the way through the HOURS it took for me to finish a page. I was worried about balance, accents, placement, color.... The list does not end! The only thing I seem to do naturally is journal so eventually I gave up and went to blogging instead - pictures and words all contained efficiently in one place. I still love my blog and I love that my kids spend hours gazing at the memories I've tried to compile, but I miss the artistic aspect. But thanks to Dina I think I've freed the muse within!

Most of what she did was to introduce us to some different mediums and create color backgrounds on paper. There was just enough direction so you didnt stare at a blank page hopelessly but not so much to squelch your own crative jucies. It was a blast to play around with ink, paint, stencils, etc with no preconceived idea of the end product which was exactly what I needed to do. It was in the process that ideas would take on a life their own. The clors, the lines, stencils I had randomly chosen would grow and take on a tone or a feeling. Dorky as it sounds it spoke to me and listened and took a little leap. This is what I ended up with and it's a far cry from the carefully structured self I show, but I like how free it is!

This is my first attempt. Inside the figure I wrote, "don't think too much, just learn to be free. You know your true self inside!"


This one if my favorite and journaled, "Your mind and Imagination can take FLIGHT!"


So I'm thinking I found a new love .... And now I just need the time and materials to explore further! Thanks Dina for it! It was more than a class, it was an adventure with new possibilities!

Most pictures courtesy of Shannon Baker, the main organizer of the event. Check out her blog for more details.

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!