Tuesday, May 26, 2015

winner winner chicken dinner

Hope you all had a fabulous Memorial Day...


our amazing American Moccs by hellomoccs.bigcartel.com


The winner of our Apple Watch Giveaway is....





CHELSEA OBERLANDER !!

Please contact me with your email so I can get your address and mail you a brand new Apple Watch :)

Thank you to ALL who donated- we still have to add in $100 that came in offline donations, bringing our grand total to $1,660 raised for the Alvarez family - we are so very grateful for this precious family and so appreciate all of you who partnered with us to help them - God bless you all !!

Friday, May 22, 2015

Giveaway extended


Thank you to all who have donated in our Apple Watch giveaway for the Alvarez family ! So far $1,365 has been raised and we are so very grateful .

Earlier this week several people emailed me saying the donation site had been down - I contacted the person in charge of the Go Fund Me campaign for Lee Alvarez and they were able to get things up and running again . Because of this, we would like to extend the giveaway until Monday, May 25. All entries up until midnight on that day will be accepted ... please consider sharing this giveaway on any of your social media sites for an extra entry as well.

Thank you again, and please continue to pray for the Alvarez family.

Tuesday, May 5, 2015

Hope For Lee - Apple Watch Giveaway

About seven years ago, my husband and I drove to Oroville, California, to do a parenting class for several churches in that area. We belong to a fellowship of Christian churches worldwide, and some friends of ours who pastor in Oroville had invited us down for the weekend. I spoke at a Ladies' Tea on a Saturday afternoon, and that evening my husband spoke on parenting - afterwards we did a time of questions and answers, and the next day he preached for the church there.


One of the couples attending the seminars that weekend was Lee and Belinda Alvarez - they have attended our fellowship church in Redding, California for over twenty years.  They have five beautiful children, and over the years Belinda and I have become friends via email and Instagram. 







Belinda started a small accessories shop called JuJuBee Creations, and several years ago she sent me a package of adorable hair bows and skirts and scarves for Lily... she did the same for my daughter-in-love and her sister, who also attend our church here in Corvallis. We were so blessed to receive these surprise packages at Christmas time, and I prayed for a way to bless Belinda back. 





Through a series of emails, I learned that Belinda's husband, Lee, was diagnosed with diabetes 23 years ago. In 2010 he was diagnosed with kidney failure - he was placed on dialysis for several months until his kidneys improved ... four years later his kidneys failed again and he was diagnosed with end stage kidney disease. He was placed on dialysis again - he is currently still on it for the foreseeable future. 







All of this took a toll on Lee's body - he began experiencing circulation problems in his fingers and feet, which led to having three of his fingers partially amputated. He then developed sores on his heels due to poor circulation and lack of blood flow to his feet ... he had several procedures done to help improve circulation, including an artery bypass to the left leg that was unsuccessful. 



Lee, prior to surgery, giving his daughter away 

Lee with his daughter, last year




Because of this, Lee had his left foot and part of his leg amputated two weeks ago. He is now having problems with his right heel- the doctor told Belinda he has a 50/50 chance of saving that foot. He has been on a waiting list for kidney and pancreas transplant but was recently placed inactive due to all the open wounds he has. Once all is cleared, he will be active again. He has accumulated 4 1/2 years waiting time so far. 








Friends, I want to repost some of my friend Belinda's words from Instagram here, because she is a living example of grace under fire. Every time she posts an update on Lee and what he (and she) are going through, she speaks of God's goodness and help and strength- I have never read one word of complaint or despair in all of the years of knowing her. She has never questioned why they are going through things, never doubted that God would take care of them through it all, never expressed one hint of anger or bitterness or regret about where life has taken them.



 Her faith is incredibly inspiring to me, and I am moved by it - I am humbled by it. 
















"God is faithful." 

"God is so good."

"YET I WILL REJOICE IN THE LORD!"


These words were spoken in the midst of one of the most difficult seasons in my friend's life. 


Belinda, when you read this, I want you to know : you are my hero.


Because of Lee's condition, he has not been able to work for quite some time. He receives disability - $1,000 a month. Belinda has tried to work from home (between dialysis, recovering from surgeries, etc. Lee needs her full time care) but their situation has become desperate. They were not able to renew the lease on their home, and they moved in with her sister and her family. Lee does have medical insurance, but they have accrued medical bills for uncovered procedures and medicines and co-pays... they are just scraping by right now.


Sam and I have been praying for the Alvarez family for quite some time now- and praying for a way to help them. I know the world is filled with intense situations like the one Lee and Belinda are facing right now. I know we can't help everybody we meet who is going through some type of crisis... but we know this family. Maybe we can't solve every problem in the world, can't rescue every hurting child, can't donate to every charity there is out there.... but we can try to meet a need that God has put on our hearts that is right in front of us. We can do our part and ask God to move on hearts to do the same.


Last week, after praying for some time about what we could do for the Alvarez family, my husband came to me with an idea. . . and I am shaking a little as I type these words .... because so far I have only done giveaways for adoptions, and I'm going out on a limb here. But Sam and I feel compelled to help Lee and his family, so here it goes ...



38mm Space Gray Aluminum Case with Black Sport Band



Announcing the Hope For Lee Giveaway, featuring a brand new, just released, Apple Watch Sport, valued at $349.



The rules are simple :

Donate to the Alvarez Family on their GoFundME page here :  http://www.gofundme.com/svbe2w

Donate ANY amount, ten dollars or above, to be entered to win the Apple Watch Sport.

YOU MUST COME BACK HERE AND LEAVE A COMMENT SAYING THAT YOU DONATED TO BE ENTERED TO WIN. (You do not need to share the amount that you donated.)

Because Go Fund Me does not allow giveaways on their site, it is important that you : a) understand that I am hosting this giveaway, and not the Alvarez family. Their Go Fund Me page is being hosted by Belinda's sister, not myself. b) come back here to leave a comment to be entered to win the Apple Watch. We will compile a list of donors based on the comment section here, and verify that donations were made to the Alvarez family.




ADDITIONAL entries in this giveaway will be given for the following :

Share this giveaway on Instagram, using the above photo (or photo of your choice) and the hashtags #applewatchgiveaway and #hopeforlee  (if you are private on IG, screen shot your post and email it to me to verify that you posted it. ) Please leave a comment letting us know that you shared this giveaway there so that you receive an extra entry.


Share this giveaway on Facebook or twitter, and mention it in the comment section below. Please include a twitter username as well as Facebook username, so we can verify entries. Please make sure to let people know they must leave a comment here to be entered to win.


This giveaway will run through May 22nd, 2015, and a winner will be announced the next day. All donations and entries must be recored by midnight on May 22nd to be considered valid.

We will select one winner from our list of entries, and that winner will be selected by using random.org.  

You may share this giveaway every day leading up to May 22nd ... please include a comment for each separate entry so that we know how many entries to record. 


Friends, if you've never participated in a giveaway on A Perfect Lily before now, I'm asking you to do so today. I know we might not be able to cover every expense the Alvarez family is facing, but together we can make a difference in their lives.

Thank you from the bottom of my heart for reading and joining with us in donations and prayer- God bless you for your kindness.







Tuesday, April 28, 2015

Down syndrome : where we are today

Note: I started this post yesterday... but like most things in my life, I didn't finish it as planned. 


Carry on...


 ***********


 I was just inside my house putting Lily down for a nap when our son Tyler texted me from work – "are you doing anything outside today?" All weekend long I had been looking at the weather app on my phone and making a mental note that Monday was going to be a day of sunshine and perfect temperatures. This morning when I woke up I had every intention to make it outside. And then .. laundry and dishes and homeschooling and a puking child interrupted those plans. 

It took a text from my son to remind me that these kinds of days are not always a guarantee in our neck of the woods… so here I sit on a lounge chair in my beautiful backyard, soaking up the sun, and voice texting this post into my phone. The sound of lawnmowers is buzzing in the air, the smell of spring is everywhere, and the warmth of the sun is penetrating my Old Navy T-shirt and jammie pants....

And yes, it is perfectly okay to be in your jammie pants at two o'clock on a Monday afternoon. I looked it up in my Rules For Housewives Manual and it said so. In fact, it not only said it was acceptable, it said it was required attire for Mondays. (That's right underneath the paragraph that mandates chocolate for breakfast on Mondays, just in case any of you housewives lost your Rules Manual and were wondering.)

So let's see, what do I have to say on this lovely sunny Monday afternoon?




I will start with something that's been floating around in my brain for the past few days…





I have not blogged about Down syndrome in a long time.  I thought about this several times this weekend ..

And what I came up with was this : it's not because I don't care about the topic or that I don't have anything to say… It's just that it has sort of taken a backseat to things in our lives over the last few years, and I find myself forgetting that this blog started off with that theme in the first place. It's almost like an afterthought in a way - oh yeah, this used to be a blog about Down syndrome . maybe I should talk about that again some day.



typical day : Lily in her kitchen and Hayden questioning her sense of fashion for the day

I follow some young moms on Instagram who have children with Down syndrome who are just babies right now… These moms have such a passion and a zeal in their posts about their children, and I identify with them. I see myself in their words, and I remember what it was like to "feel all the feels" right after we had Lily and were new to the whole world of special needs.

And it's not that I care less about being an advocate now that Lily is five ~ it's just that time seems to mellow things, you know? I realize that we still have many years ahead of us, and many more challenges to face that we haven't faced yet… but at the same time, things don't seem quite as intense as they did when Lily was first born. 




For instance, in my experience (and I do realize my experience might be unique) I don't go into public with Lily on a daily basis wondering what people are going to say or think anymore. 

I think when she was first born I felt the need to explain things to people when they first met her – ( I have no idea why). I think I felt the need to kind of break the ice with some silly little sentence explaining that she was blessed with an extra chromosome, or that she had designer genes or something of that nature. It's not that I did it every time we met someone new - I just felt like it was the elephant in the room for a while, whenever we were out and about. 

But over the years I've sort of noticed that the elephant in the room was many times ... just an elephant in my head.

For the most part when people meet Lily, they just smile and say hello and remark on what a darling little girl she is . Occasionally someone might mention that they have a friend or relative with Down syndrome - but I have not experienced any negativity or pity in those comments since Lily was first born . In fact, I can count on one hand the times someone has said something negative about her extra chromosome - and those incidents have been so rare that I can pinpoint exactly when they were. 

Lily's genetic makeup is, for the most part, a non-issue. And if it does come up, it is never anything I feel I need to defend. 

I have been pleasantly - make that wonderfully - surprised at people's reaction (and even lack of reaction ) to the fact that my daughter has Down syndrome. Whatever negativity I once expected to face in the world has been microscopic compared to the overwhelming kindness and love and grace we have experienced thus far.


selfie with her boyfriend/brother




So right about now, there are probably some moms who are a few years down the road from me on the journey of special needs, who are reading my happy little post and thinking "oh just you wait."

And perhaps they are right- perhaps there are some very unexpected and unpleasant experiences just around the bend for us, ones that will knock me to my knees in despair. Lily is only five, and she is for the most part, surrounded by people who know and love her. She is homeschooled like her siblings, and I don't see that changing in the future. 






So we obviously haven't had to deal with IEP's or fighting with any "system" to get her the help she needs. I know that some of my friends in the Down syndrome community have had to step up their game as far as advocacy goes, once their children became school age - I've read blogposts and text messages and articles, and I've seen the battle that is still going on for many as far as inclusion goes. I know that in a sense I have been shielded from that part of the equation, because of our decision to homeschool Lily as we do our other children. 




stealing brother's schoolwork. because she LOVES to write :)


But school politics and IEPs aside, what I have witnessed on a day-to-day basis is a culture that is gracious and kind and accepting of my daughter's diagnosis ... and I'll go so far as to say that Lily is treated better because of her condition than if she had no condition at all. On a regular basis I have total strangers tell me what a beautiful little girl I have, and remark on what a blessing she must be.


At the eye doctor- she had the receptionist, the doctor, and all the nurses wrapped around her finger the entire time. She marched down the hall to the exam room with her purse on her arm like she OWNED the place, and they offered her about 25 billion stickers when she was done - I'm pretty sure they would have given her a pony if she had asked .





I'm really not trying to paint a unicorns-and-rainbows picture here of life with Down syndrome. We have had plenty of hurdles to overcome developmentally-speaking since her birth.





But what I have seen thus far is that Lily- just like all of our children- has strengths and weaknesses, and that many of the things she has struggled with were just delays.


For example ...

She rolled over from birth, smiled before any of our other children did, and was by far our easiest baby - hands down.




It took her four months to learn how to nurse.

She learned hundreds of signs before she could talk, began recognizing words and flashcards before she could stand, and could charm the socks off a stranger with one toothless little grin.

She never practiced standing - she just threw herself up in the air from a squat one day and surprised us all.





She didn't walk until she was two, didn't talk until two and a half, and she just mastered potty training last month.

She has been our healthiest child, with the least amount of trips to the doctor, and aside from getting tubes in her ears when she was two, she has had no surgeries. She is rarely sick.




When she is sick, it is almost impossible to get her to drink. She's had several "borderline dehydrated" incidents and one trip to ER last month for IV fluids. .. and it was quite a scare.

She loves to dance, has incredible rhythm, claps on time to songs in church, and sings along to the music (her own words.)




She is cognitively nowhere near where a typical five year old would be.

She does not really answer open ended questions  (what did you do today, where are your shoes, what do you want to play? etc) and often repeats a question back to us.




She can follow two or three step directions to a tee.

She can climb onto barstools and into the van, go up and down stairs easily, go down the slide at the park herself and chase her baby brother all around the house.







She does not hop on one foot or jump very high (yet), cannot snap or button her pants, and has a hard time getting her arms into her sleeves.

She recognizes many letters, reads over thirty words, has written her name several times, and knows exactly how to get on Duggars episodes on Youtube. By herself.

She cannot pronounce the letter F or V yet, she often says words backwards (nac for can) or jumbled (noccor for Connor) and we are working hard to use five and six word sentences.

She has an incredible memory, she knows how to open apps and play games on my phone, and she is an expert at taking five million selfies unbeknownst to me.






She is a little character. She has the biggest belly laugh you've ever heard and a wicked sense of humor - she makes us laugh til our sides hurt.






She works hard to overcome her delays, she is tenacious and determined and loves to learn, she is patient and sweet natured and affectionate to the max.

She loves to play in her kitchen, eat Cheerios, sit and read books, draw endless circles, play with her baby brother, color in coloring books, rock and sing and shush her baby dolls to sleep, swing on swings, and most of all snuggle.


She gives the best hugs, most tender of kisses, and her favorite thing to say is "I wullah" - which is I love you.








So this is where we are at, five and a half years since I sat down at my computer and typed the words Down syndrome into a blogpost for the first time.


I'm copying those words here- and leaving them as I first wrote them - when I didn't know that Down syndrome with a capitol D and no s at the end was the correct term for the condition my baby girl would be born with - and when I didn't know how good life was about to get.



I finally ask (the doctor) what is floating around my brain- is this a marker for downs syndrome? He blinks and nods his head and says yes, any time there is a heart problem, especially av canal, that is a strong marker. I ask- and the kidneys? He looks me in the eye, nods, and says yes, that is a marker too. I just stare at him, and he stares back and pats my leg and says "I know, it's not easy to hear." ...or something like that.









....We drove home and talked as we drove...Daddy reassuring me that we don't even know yet IF there is anything wrong...Kenzie very quiet in the back. I made several phone calls, decided we didn't want to tell your little brothers and sisters anything until we know for sure. Asked friends for prayer...stared over and over again at your angelic face. 

Calmed down- God is going to help me through this journey. 

Maybe it's a short one, and in 3 weeks we'll find out there was nothing to be concerned about in the first place. Maybe it's a little longer- maybe you'll need surgery and then our lives will go on as before, this just a bump in the road, albeit a big bump.

And maybe this is a life-long journey, one that will bring new changes, and challenges, and things we never knew we'd go through...

But either way, God is faithful and He knows the road. I know He is going to give me strength for whatever we go through. I feel it already. 






Baby, whoever you are, know this. You are loved. You are cherished, and longed for, and prayed for, and treasured, and so so loved. I don't care what you have, how many chromosomes, how many defects, Mommy and Daddy will take care of you and do all that we can to show you how very loved you are.








And she is.

xoxo

Saturday, April 18, 2015

A Day at OMSI


Before I get started with our field trip to OMSI (Oregon Museum of Science and Industry) I wanted to wish this special little princess a happy first birthday ..




One year ago today I was standing in a softly lit hospital room with my son Josiah and his beautiful wife Monique, as we welcomed Miss Macie Blair into the world. One of the happiest moments of my life, and I can't believe it's been an entire year since it happened ! Macie is the perfect mixture of sugar and spice- lots of both interwoven into this feisty little girl's personality, and we are so so blessed to have her in our family. 








HAPPY FIRST BIRTHDAY, MACIE !!!



We are headed to Macie's first birthday party in a few hours, so this post will be looooong on photos and short on words.

OMSI has long been a family favorite - just an hour and a half away from us in beautiful Portland, it is an awesome place to visit for children and adults alike. We have visited OMSI for years, and it never gets old.

Last Sunday Sam preached both Sunday church services for friends of ours pastoring in Portland. Hayden and Lily and I joined him and spent a wonderful day catching up with our friends and enjoying seeing how the Portland church is doing. I so love being a part of a fellowship of churches around the world, because it doesn't matter where we go - the spirit of our churches is always one of vibrancy and excitement and life !  It was so nice fellowshipping with the saints and soaking up what God is doing in P-Town :)



The next day we had planned to take the little ones to OMSI, as they are the only members of the Rice family who have not been there. We didn't realize it was closed on Mondays though ... it was too wet for the Portland Zoo, and we wanted to save our money for OMSI, so we opted for sleeping in and then heading to one of our favorite places to eat ...




Black Bear Diner !!


The food is delish and the service is always spectacular- it is kid friendly and reasonably priced as well. I could seriously do a commercial for them.







Actually, I probably just did.


Black Bear was the highlight of Monday, and we spent the rest of the day relaxing (insert maniacal sarcastic laughter here) in a hotel room with two rambunctious children and a bag of popcorn or two.

Oh yes, we ordered pizza.

do not let this happy moment trick you into thinking this is how we spent the day. if i posted the other 99 % of non-happy moments here you would  probably run screaming from the computer in shock and terror. you're welcome.


I am pretty sure the occupants of rooms 218 and 222 were ecstatic beyond belief when Sam and I checked out the next morning, taking our very loud, whiny and cabin-fever-stricken children with us.

In fact, I think I heard cheers of jubilation from the hotel lobby as we drove off, but I digress....





PRAISE GOD FOR OMSI !!!!





And this is the part of the blog post where my words run out, because I have herds of children here to ...well, herd...  to a party this afternoon.

These pictures probably speak for themselves anyway, but here is our day in a nutshell :

Lily and Hayden running from exhibit to exhibit, squealing and clapping and smiling, and Mommy and Daddy chasing them while squealing and clapping and smiling because we weren't caged in a small hotel room with loud, whiny, rambunctious stir-crazy children anymore.


I'll say it again...


PRAISE GOD FOR OMSI !!!




... and their food. which was a - MAY -zing.

































If you are ever in Portland, I highly recommend a day at OMSI. A family membership - even for a super-sized family like ours - is very reasonable priced, and you could spend an entire day there without doing everything they have to offer.  It's like Disneyland without the mouse ears and rides and castles.... okay, it's nothing like Disneyland, but it is still a fabulous place to go.




PRAISE GOD FOR OMSI ;)