Monday, August 27, 2012

Eli's Allies

The Lord has a funny way of teaching me faith. A few years ago when I was pregnant with Keila we recieved a false positive for Down Syndrome and was given the option of an amniocentesis. It was one of the things I have feared the most simply because I know my weaknesses and I didn't think I could raise a child with special needs. After much debate we didn't go through with the amnio due in part to the risk to the pregnancy. In a discussion wiht a friend, she asked if it would honestly make any difference to know since abortion was not something we believed in. I realized that the control freak in me just wanted to know before birth so that I could read and be prepared for 'everything'!

Ironically in all my testing during my pregnancy with Elias, there was only one small possible indicator that put me at 1 in 1500 chance of having a child with Down Syndrome. Dr. Desalvo was shocked because I was the first patient in all these many years of his practice that 'slipped' through the cracks. When we first got Elias' diagnosis of Down Syndrome we were rather overwhelmed. It was a new ballgame dealing with 3 children. Vacation time for Kent was used up for his birth and subsequent phototherapy treatment. There was a torrent of doctor appointments and I was just functioning to feed everybody and keep myself as alive and awake as possible wiht a newborn.

Now, when I truly needed it, I didn't have the time to go out and research to know what I might be up against with Elias' diagnosis. I did have one friend who knew from experience with her own son which was of great comfort. But I also knew I'd have to learn to advocate for my son's needs, learn the laws and resources avaliable to me. This is where Sharing Down Syndrome of Arizona became a huge resource.

Gina Johnson began the organization years ago when she realized how little there was in AZ to support parents in a positive way. The organization makes a point to meeting individually with parents and children with Down Syndrome. From my conversation with Gina, I believe she makes most of these visits herself. We chatted briefly on the phone and I could tell she was an intensely passionate soul but nothing quite prepared for all the 'little things' she'd bring.

She was most definately prepared. She had brought coloring books to keep Isaac and Keila occupied while we talked. As she cuddled Elias she shared with me her story, how she learned to advocate for her son David, the wisdom of seeking and using as many resources as possible, most of all she keep reassuring me that Elias would be a treasure in our lives we could not yet fully comprehend. After our 2hour 'chat' she loaded me with matierals: books to help comfort, positive helpful books on therapies and legal issues related to children with DS, a picture book for my children to help them understand their sibling, resources for Elias like signing time DVDs, journal, books, blankets, CDs, etc. All in all the materials must have costed over $200 and finally she urged me to call her again if I ever needed anything.

I can't begin to explain my gratitude. The organization helped us emotionally and physically with no strings attached. For that reason Kent and I wish to give back somehow. They hold an annual Down Syndrome Walk in Tempe free of charge full of fun activities for friends and families who have someone with Down Syndrome. It is their main fundraiser and despite being the least likely of people to do such a thing, we've formed our own team - Eli's Allies to raise some funds for them. Feel free to join us for the walk on Sat Sept. 22 at the Diablo Stadium or feel free to donate whatever amount you are comfortable with using this link. If you wish to donate to a particular team (say Eli's Allies!) you can select the team which will help to our goal of $200. Or if it's easier, we have our own page.

A big thank you again to all those who have been with us on our little journey. We are grateful to be blessed with Elias and feel the warmth and support of friends and families. You are truly Eli's Allies!

PS Special thanks to Shannon Baker for the name for our team. Otherwise I'd still be agonizing over it. It was one of those 'speed bumps' I needed to be pushed over so I could keep moving! ;0)

Monday, August 20, 2012

Little Things I Love

Here are some random things I want to remember about my kids:

Elias is the only one in our family to be an outie. Keila is facinated with it for multiple reasons. First off it's got a perfect swirl to it so it looks like a tiny cinnamon bun. Second, it pokes out so much that I have to watch that she's not pinching and pulling it out further! Poor Elias, I wonder if he'll survive his siblings!

Keila has a very generous heart. Isaac has learned that when they argue over a toy, if he stops to say please kindly, she will almost always hand it over right away. One of her first stuffed animals that looks just like our friend's dog, Annie. In fact, they named it after her and for the longest time she slept with it. Their daughter, Stephanie, babysits the kids frequently and so when Annie passed away they were very concerned about how Stephanie would feel. Isaac suggested making a card but neither of them could draw a dog so the idea to just give 'Annie dog'. I have to say I was rather proud of her she handed it to them and said it was so they would remember 'Annie doggie'. She gave from her heart! This is her on a Sunday morning with her 'princess hair' and her 'Chinese princess dress'!

Isaac has a great imagination. Kent was telling of an incident the other day while they were outside working on the front lawn. Living so near the wash has often brought bug problems, in particular ants. Grumbling about the annoyance of having to set out 'ant poison' again, Isaac overheard and thought he'd be helpful. He 'talked' to the ants for a while and later pulled Kent aside to whisper to him. Seeing no one was around Kent asked what was up with the whispering, but at Isaac's insistance, he bent down to listen. Apparently he'd told the ants the poison was cheese, yummy cheese at that and he was pretty sure he had tricked them into taking it back to their home. Kent had a good chuckle over it. Here's Isaac playing tummy time with Elias. He loves to make the little guy laugh!

I love watching movies with my kids. It's not the movie I enjoy so much as watching their response, at this age their emotions are so transparent. They laugh uninhibited, Isaac will ball up his fist as we watches a bad guy get the upperhand, or Keila will turn and tell me how the bad guys 'is NOT nice!' and they both get emotional at the sad parts. Isaac is particularly prone to this, his eyes well up with tears, the sniffles start and if the sad part extends even longer, he begins to cry into your shoulder. At the most tense parts of movies Isaac can often be heard reassuring Keila that it will be alright. I wish I could capture it on camera and have tried many times but they either come out looking stoned or else I distract from the movie and they get irritated with me. This was a shot I managed just the other day.
See the stoned look! I love how Isaac moves in to put his arm around Keila in case she gets scared and how Keila leans toward Elias to snuggle him.

My 3 little angel hearts! They are more dear than words can say!

Thursday, August 16, 2012

Loss of a Friend

It's so easy at times to get caught up in the 'doing' of life, rather than the 'living'. Things come along to remind you what really matters and unfortunately these things are often sad. We just learned this morning of the passing of a good friend - Brian Layton.

Before Kent and I married, I attended a ward/congregation for singles in Mesa. It was here that Kent and I met through something we call FHE or Family Home Evening. The ward is divided into small groups of 'families' with a 'Mom and Dad' who oversee activites. These families are organized under a 'Grandma and Grandpa' who arrange the large group activities. It was weekly thing and a ton of fun. I was 'Mom' over Kent's group and eventually I worked with Brian as a 'Grandma'. We worked together for about a year organizing crazy events such as karaoke, BBQs, Olympics and even an elaborate scavenger/rescue hunt for each family's Mom. Brian was a great guy to work with and a perfect 'It'll be okay' attitude for my anal type A personality. There's such a wealth of memories that go with that time together and wonderful friendships too.

Kent and I still have hanging on our wall pictures of a trip we took to San Diego with a group of these friends. Paula Prince was one of the girls on the trip who was recently asked to be one of the group Moms. She began asking me questions about Brian. I was thrilled to pieces because she was clearly interested and we just had help Brian see it. It didn't take long before they were engaged and they married the day after us. It was fun to joke and tease together as we were all making our marriage plans and dealing with marriage woes all at the same time.

We moved off to Glendale but saw them on and off at Christmas for the temple lights. A reunion of sorts was arranged back in 2009 where Brian attended (Paula was having a babyshower for their first child that same evening) We joked around, it was clear we were all a little older, rounder and somewhat wiser because of time and life. That reunion didn't seem all that long ago so we were in shock to hear that Brian had passed suddenly due to heart failure. Not the thing you expect from a healthy active 37 year old man. In the time we worked together I got to know his mom and his brother Mark. I feel deeply for them but in particular, I feel such sorrow for Paula and her 2 sons.

A picture from our reunion 3 years ago, Brian is at the back with a baseball cap on.

May the Lord's peace fill your loved ones while you are away, until we meet again in the eternities you will be missed.

Wednesday, August 15, 2012

Good Eating, It Runs in the Veins

Growing up in a Chinese household makes living a lot about food - you always do it well, at least 3 times a day and there is plenty to go around. I'm still amazed at how my Mom managed to cook at least 2 dishes every evening along with a soup for dinner. Lunches were usually full on meals until we started school where there's not much you can do and packing a lunch is tedious, so Mom resorted to the now famous roast beef sandwich. It was the leftovers from a Sunday pot roast and it appeared 5 days a week in my lunch for 6 years of my life with such predictablilty that it was a daily joke with friends. It was the only time I didn't eat like a horse and to this day I'm leery of making a roast or having it in a sandwich!

So it should have make sense to me when Elias began not eating so much. He'd grumble in his cutie 'old man way', play with the nipple with his tongue and pull away when he'd only eaten 3-4 ounces. (He's up to 6 oz now) Kent suggested he was just plain bored with his food. The only reason we hadn't started solids was because his core muscles are not to a point where he can sit up on his own but we prop him up with pillows and fixed up his first meal of oatmeal. It's always fun to see a baby taste food for the first time and he was clearly excited at the prospect of something different.

Despite having a smaller mouth and the tongue protrusion, he picked it up quickly and chows down a good amount. Now he'll gladly drink his 4oz then eat his solids and wash it down with another ounce of milk. Here's hoping he'll start putting on some chub-chubs with this change in diet!

Here's a few more shots of him smiling, he really makes me work at getting a picture of it but it's so worth the effort!

Friday, August 10, 2012

Three Years Already!

Happy Birthday Keila Bug! I can't believe how quickly time flies. It wasn't all that long ago when she'd sit in my lap, content to watch the world. Often she'd tuck her head under my chin and snuggle in if she need a little extra reassurance. With a little encouragement and confidence she grown up into a darling little chatterbug, just as daring as big brother and holds her own nicely.

It amazes me how much she is her own little person from the get go. Coming from this fashion illiterate mother, she definately knows what she wants and how things ought to look like. She loves clothes, jewllery and painting her nails. In the years to come I'm sure to be taking fashion tips from her!

Keila loves to be all grown up which makes me a little sad sometimes (how did I lose that snuggle bug so quickly?) When Isaac is working on his ABCs, she'll pull out a piece of paper and work on 'homework' too! She loves drawing, projects and crafts. Her other great love is food and always want to help in the kitchen, it's become our way of spending special time together.

When she was asked what she wanted for her birthday she was rather adamant - chocolate and ice cream! That's my girl. So the evening of her birthday we went for chocolate fondue. We got lucky, Melting pot is doing a deal where if the temperatures are 112 or above at the Skyharbor Airport, they give a free cheese/chocolate fondue for 2 the following day. We did the cheese and paid for the chocolate and opened presents. Keila loved the experience and we had no problems being a part of it! ;0)
Her response to her princess lip gloss and nail polish.
Licking up every bit of the experience!
Getting a little help with blowing out the candles.

Of course there was cake at home later and the following day we went out to our favorite pet store, Pratt's to pet the ducklings, baby chicks, rabbits and turtles in our reach. After lunch she got her second wish and had an ice cream cone. It's funny to me how simple these things are and yet they are her greatest pleasures.
This picture courtesy of Emily Baker, awesome shot!

Happy Birthday my darling baby girl, I love you more than words can say!