Friday, March 29, 2013

Ethan Saylor: a call to action

Dear friends,

Many of us in the Down syndrome community are aware of the tragic death of Ethan Saylor, a 26 year old young man with Down syndrome. When I first read about Ethan my heart broke. It was every mom's nightmare about the future for her child with special needs...because some day we might not be available to our children as they become adults; some day there may be situations that arise that are beyond our control.

Right now Lily is with me almost 100% of the time. Right now I know what is happening in her life, who she comes into contact with, how safe she is. Right now she can call for Mommy and I am at her side in a moment's time.

If you have not had time to become familiar with what happened to Ethan Taylor, this post is for you.

All week I've wanted to address this situation, but I haven't had the words to do it. Combined with that, I am aware that there are always two sides to a story. I have family members who were or are in law enforcement, and I have the utmost respect for those who put their lives on the line every day to do their jobs and provide safe communities for our nation. I'm also aware that there can be "gray" areas when it comes to cases like these. I don't know all the facts- I don't know why this aide left Ethan alone in a theater, I don't know what Ethan said or did to cause the officers to respond the way they did.. all I know is what I'm reading online.

But the bottom line is that no independent investigation has been called, and there is a grieving mama and community who knew Ethan, who want answers. If there was no wrong done on the part of the officers involved, an independent investigation should bring that to light. If there were grave mistakes made, intentional or otherwise, that can be addressed, that will perhaps change the future for individuals with special needs, then that is what this post is aiming for.

Because some day Lily is going to face situations that are out of my control...and if she ever faces a situation where her rights are in question, I would hope there would be a community that would rise up around her and be her voice.

Today I've asked my blogging friend TUC for permission to reprint her post here,  It's Not That Complicated ...she says the things I wanted to say, and says them so much better than I could have.

Please, please take the time to respond to her call to action regarding Ethan.


 by TUC

The Ethan Saylor case has dominated my mind, my heart, and my Facebook feed for a few weeks now. I have read just about everything news agencies, bloggers, and organizations have published on it.

(Is your Facebook feed saturated with Ethan Saylor posts? Are you sick of it and fairly sure enough other people are acting on this? Well, you can skip this post if ya want to, but please don’t think someone else is standing up in your place.)


And no matter the slant, no matter the details in one post versus another, an unarmed young man died in police custody in a Regal movie theater in Frederick, MD on January 12. His alleged crime was that he refused to leave the theater after a showing of Zero Dark Thirty was over. Three police officers attempted to remove him and one thing led to another (that is my compilation of the various details I have read) and Ethan wound up handcuffed face down on the floor. Shortly after that, he ended up dead.

His autopsy report states there were several contributing factors leading to his death, and ultimately called it a homicide. The case was internally investigated and then a grand jury in Frederick decided that there was no cause to charge the officers involved with any malfeasance or misconduct of any sort.

How is it possible that a 26 year old man can go to a movie and wind up dead, and nothing is responsible for this except the fact that the man himself was defective?

The National Down Syndrome Congress explains much more clearly than I can that this is a human rights issue. When you read their statement, and find out that the man’s mother was on her way to the theater to diffuse the situation, it is enough to break your heart.

Because really... impatience, unnecessary force, and a lack of judgement is what killed Ethan Saylor.

It is true that Ethan was in the wrong when he refused to leave the theater (he wanted to watch the show again). It is true that Ethan Saylor likely got very upset when attempts were made to physically remove him (witnesses say he cried out for his mommy). It is true that sometimes people with Down syndrome are down right stubborn and refuse to move when you tell them to.

ethanIt is also true that if Ethan had been allowed to sit there in the theater and wait for his mom, he would still be alive today... and Regal would be out all of 12 bucks for the seat.

Would that have been special treatment? In my mind every unarmed, out-manned citizen should be treated with patience and the least amount of force possible until all feasible options are exhausted.

If you agree with that, then please consider signing the petition (started two months ago by Ethan’s mom) to request an independent inquiry into the matter.

Raise your hand if you love a police officer (my hand is up). Raise your hand if you think cops put their lives on the line everyday protecting us (my hand is up). Raise your hand if you think all police officers are perfect, that they never misjudge a situation, never make a bad call, and never hurt someone unnecessarily in the course of carrying out their work...

If you put your hand back down, please call the Dept. of Justice (they are involved and are "gauging public reaction before deciding their next step") at 202-307-5138 and let them know that for Ethan’s sake, for all of our sakes, it is important to begin an independent investigation of what actually happened to Ethan.

Wednesday, March 27, 2013

random thoughts and a Lilyduck

It's ten thirty Wednesday night and I vowed to myself I was going to get to sleep at a decent time tonight. So this will be a photo-heavy post with very random thoughts strewn throughout. Hope you don't mind.

Baby number 11:

I think about him/her all the time. I mean all the time. I wonder who he/she is, and I wonder how Lily is going to handle his/her arrival. Lily is so very much the baby of the family, and even though I know she will adore this baby, as she adores all babies or baby dolls.. I'm thinking there will be a few jealousy issues. Even though there will be almost three and a half years between Lily and baby #11, she is much more on par with an 18 month old as far as cognition, I'm anticipating some of that sibling angst we've been through before. I keep telling myself that our other kids always weathered through fine eventually, and this time will be no different. But part of me wants Lily to stay our baby as well, which is creating a lot of emotional turmoil. Not that I don't already have a lot of emotions these days- pregnancy hormones are raging for sure. One second I'm giddy with excitement over this last stage of pregnancy, the next I'm crying on the phone to Sam wondering how I can make it through 8 or 9 weeks more. I'm a lil' schizo these days. I admit it.

Grief, Hope and Miracles :

I had so much feedback on this series. My heart just goes out to so many mamas who have experienced loss far greater than what I have. I am so amazed at these women who have shared their blown away by their strength and their faith, and so inspired to lean more heavily into Jesus during the hard times of my life. I am so honored to share their stories here, and so encouraged by their testimonies about the grace of God carrying them through.

A Penny From Heaven

I have a big giveaway coming up next week on A Perfect Lily. We'll be aiming at helping Penny's family adopt her, and helping them in a big way. I hope you will tune in, and pray, and help me spread the word about her adoption. It's been a long time since I held a giveaway on Lily's blog, and I am so excited to see what God will do next week. PLEASE be praying about this !!

Thank You

Earlier this week I wrote a post called Get Over Yourself. I had so many comments on that post- sweet, encouraging, uplifting comments, and I was overwhelmed by your love and graciousness. The intent of that post was not to solicit that kind of encouragement, but to confess my weaknesses and sort through the feelings I had ever reading some negative comments on another site. I just wanted to thank you all for taking the time to leave a comment, because it really, REALLY did help me. It helped too, to see how many people go through the exact same struggles I do. Thank you from the bottom of my heart for sharing your hearts here with me. oxox

Last bits:

My little girl is growing up. Look at that picture of her above. Where did my baby go ?? Her grammi made that ducky cap for her...I have to say that even though we are Beaver fans here in Corvallis, I absolutely love this cap :) Lily paraded around the house for fifteen minutes with it on, peeking out from under the bill like she was the coolest little duck ever. Thank you, Mom, for always blessing us with your sewing and quilting skills !!

Told you this was a random post.

It's 10:52 and Sam just came downstairs to rebuke me and tell me to get into bed.




Tuesday, March 26, 2013

Sometimes you get MORE

This is the final post in my Grief, Hope, and Miracles series. This series was inspired by Jessie and Tim Garvin, and the story of their baby Emma. I asked my sweet friend and fellow blogging mama from across the ocean to share her story of faith and love in the midst of grief for this series...I followed Janine's personal story of losing a baby and was so touched by her incredible trust in God through it all. I knew immediately when I started this series that I wanted Janine to share the hope that brought her through everything. I am as always, amazed by her incredible outlook on life and her appreciation to God for carrying her through.


"Sometimes you get MORE" 
by Janine Robinson

I feel so privileged to be asked by Patti to share our story with you, because while our story is by no means an easy story to share and many might read it as a "sad story", for us, any opportunity to share Zac's story gives us an opportunity to share our journey of encountering God's tangible grace and "heart peace" (and besides - what mamma doesn't take any opportunity she can to boast about her precious children ;0).  

Our story starts about 3 years back. My wonderful hubby and I already had 2 beautiful little girls. At the time they were 9 and 5. By that point I kind of thought our family was complete, but on my husband's 37th birthday he surprised me by asking me to trust with him for a son. I still remember my surprise! I said to him that while I could trust for another baby, I didn't want the pressure of him expecting a little boy. Whatever God added would be the blessing. My husband was adamant. He asked God in absolute faith for a son and so we started trying for our blessing. Almost a year and a half later I fell pregnant, and you can only imagine the whoops of joy and laughter that rang out of that doctors room when we were all told that we were carrying a son! I will never forget the look of sheer joy on my hubby's face. 

My pregnancy with Zac was amazing. The doctors had warned me that he would be very premature as both my daughters were, but we went into this pregnancy trusting God for full term delivery. My body responded completely differently much to their amazement. Everything was going so well. Every scan was a joyful experience, and then at my 29 week scan our real faith walk began. The doctor felt concerned that Zac was underweight so he scheduled us for a doplar scan to have a more detailed look at the state of the placenta as he noticed it was starting to calcify quite early. We walked into that room without a care in the world, but in mere moments everything started spinning around us. Just like that we realised we were facing the biggest storm we could never have imagined. As the doctor was scanning, I noticed that she kept going back to his heart. Next thing she was talking about Zac's heart having some type of major heart defect, but she could not tell accurately to what extent except that it was very serious and she was so sorry and that hopefully they would be able to operate at birth. 

She was sending us to Cape Town for more detailed scans. It all seemed so surreal, like we were outside of ourselves watching this awful moment happening. I remember trying so hard not to fall completely to pieces as we had our little girls with us, but the tears came. When we got home Brett and I sat outside together to process what we had just heard and made a decision. Either we were going to allow the fear we felt clawing at our minds take over and imagine every worst case scenario, or we were going to lift our eyes and look to Jesus and hold onto His promises of heart peace for our little boy. 

And that's what we chose. We chose to lean entirely into all that He is and is able to do. With every detailed scan from there on in and every heart-wrenching doom and gloom prognosis we were told, we chose to look into God's promises and believe for a miracle. We chose to live in peace and allow His promises of hope to become a firm anchor to hold on to. 

Just going back in my mind to the various appointments we faced, all I can see is His supernatural grace that protected our hearts in what could only be a supernatural peace. Every day His promises settled the whirlwind of emotions that swirled around us in the face of such uncertainty. Some people asked us if we were preparing our hearts for the just-in-case-your-miracle-never-happens ... but we could not go there. We wanted Zac to be carried in peace the remainder of our pregnancy. Personally, we just never felt we could prepare to grieve when we had so much hope in our hearts. We were so fully convinced that God could heal Zac one way or another - whether in the womb or through surgery. There was no way we could even imagine that he would not be in our lives. 

The doctors could not see enough in the scans to know the full effect of the defects they were seeing. All they could say was that it was beyond a label. They were seeing multiple problems but kept saying we would have to wait for his birth to see the full extent. They put together a wonderful team of doctors in Cape Town for us who would be on standby and so we just had to wait it out. 

I carried Zac full term to the end of my 37th week. The doctor and nurses went out of their way to make it such a special delivery. It felt like everyone held their breath when they brought him out of the womb. They had prepared us for a blue baby who probably wouldn't cry. Our precious Zac came out with the most beautiful cries and with much better colouring than they had expected. He was also bigger than they had estimated. Our beautiful son brought nothing but sheer joy and peace into that room! The team was amazed at how well he was doing. I will never ever forget the wonder of this day and all the joy in our hearts.

What followed, was 21 and a half of the most precious hours of our lives. We got to simply love on our precious son! It was determined after his birth that the defects were too great and complex. Terms like "not compatible for life" were used ... words that no parent should ever hear. We knew that we were holding a miracle in our arms, and every second with him was a miracle to us. It still amazes me how long this brave little boy of ours held on this side of Heaven to give us the gift of time that we so needed. 

The doctors and nurses were so taken with this peaceful little boy and with all the love and joy being lavished on him. He never endured any pain, seizures or suffering. This in itself was a big answer to the many prayers that were being prayed over him. His every moment was being in arms of people who loved him. Even when he was taken from me for me to rest, he was held by others who prayed and sang over him. It is the greatest privilege of my life to be the one holding him when I watched him peacefully enter his Heavenly home. One moment he was looking into my eyes while his loving daddy was singing and praying over him and the next he was looking into Jesus'. It still makes me cry and long so much for those treasured moments with him. He impacted our lives and hearts so fully.

What has followed since the 1st October 2011 is a journey of walking each day with our hands firmly fixed in Jesus' hand ... encountering His daily grace to carry us through every emotion possible. We have grieved, cried, raged, questioned, laughed, found acceptance and had our eyes opened more fully to the reality of eternity. 18 months later and we marvel at how God continues to lead us through the maze of loss. I see healing in my daughters, husband and my own heart. That healing doesn't mean that we don't long for our little boy each day, but it means that we have been able to live with a certainty that he is alive and well and just a little ahead of us on the journey. We still shed our tears and ask the hard questions, and graciously He faithfully washes over our hearts with peace and assurance. He has taught us to look at life so differently. These are the gifts our precious Zac has given us. 

There is coming a day that we long for when we will all be in each others arms as a complete family.

For now ... we talk about him, share his story and marvel at the impact of his amazing life. While we were the ones praying for his heart healing ... he is the instrument God has used to bring us and many others true heart peace. My son points us daily to Jesus. His short time span this side of Heaven is having an eternal impact. Just 21 and half hours of him being alive so impacted a doctor who saw the love and joy he brought us all that he told us he would no longer counsel other gynecologists to encourage abortion in the face of major heart defects, because the time he had seen shared showed him how worth it even one small moment together can be. I can say with certainty that our lives are richer for all we walked through just to have what we had with Zac. He taught us what "heart peace" is and how to see Jesus so clearly in the midst of the storm. He taught me how to walk in peace even when all around me was so frightening. He taught me how to lift my eyes and find joy. He reminds me everyday to live my life eternally minded. 

People ask us if we aren't disillusioned because we didn't get the miracle we were trusting for. We have found true peace in choosing to see the many miracles through Zac's journey through life. Someone once said to my husband "You see. Faith doesn't always give you what you want.". He went away and really pondered it and tenderly heard God's whisper to his heart ... "Yes. Sometimes you get MORE." And that has honestly been our experience. Do we wish that Zac was with us each day ... absolutely YES, but we continue to see the MORE that Zac brought into our lives. We are so much richer for all the time that we had with our precious son. He is a big part of who we are and we will keep telling his story because to us, it's a story of LIFE and not just death. His abundant life continues to inspire us to live and love each day to the fullest! 

18 months later, Zac has recently become a big brother. 6 weeks ago I gave birth to our 4th child ... Gabriel Robinson. In him I see so many glimpses of his brave big brother. Some of my sweetest times with Gabriel are lying outside on the grass next to the beautiful memorial rose garden we planted in Zac's honour. His big sisters and I love telling him all about his brother :0) And every time I look out onto his garden and see life blooming, so my heart is reminded of my precious son. I am forever grateful for the "more" he has brought into our lives as a family.

All my love,


P.S. Just wanted to share this heartfelt letter from Tim Garvin, and to ask you to continue to pray for their family...

Dear Patti,

My name is Tim Garvin (Jessie's husband and Emma's daddy). I wanted to contact you to say thank you. Thank you from her and thank you from me. The support you and your readers have given my wife has been a tremendous help as we go through this trying time and by doing that you have given me support and hope in the future. So I just wanted to say thank you and God bless you for making the hardest time in each of our lives a little easier.


Emma's daddy

Monday, March 25, 2013

get over yourself

I'm starting this post off with a topic in mind, but as I'm typing I'm fully aware that I might hit delete at any moment and erase the whole thing.

It's a topic that's been on my mind for a week now, and today when I told one of my sons I was going to address it, he asked me why. I tried to explain what was brewing in my head, but he wisely pointed out that if my purpose was to change some hearts, it probably wasn't going to happen. Because some people are bent on being critical no matter what you do - and those people don't want to change. They can't see reason, which is probably the reason they are so negative in the first place.

So in my brain I erased this post and tried to forget about it.

But here I sit at the computer, and the words and thoughts are still lingering in a small corner of my mind, and usually the only way I sort through things completely is to write it all down.

So here I go...and if I don't end up hitting publish, at least I got it off my chest in my draft folder :)

On our trip to California last week I spent a lot of time checking email, etc. on the road...we drove eight hours each day, and I was trying to get my mind off my jumping legs (blame it on the genes- my mom and grandma suffered from restless leg syndrome and graciously passed this curse onto me).

Towards the end of the first leg (ugh!) of the trip I checked my site meter for Lily's blog. It's a little gadget I have that keeps track of visitors, page views, etc. and it's just a cool way to find out who is visiting your blog and where they came from. I don't check it often, but I was I saw maybe ten hits (out of two thousand...) from an online site named GOMI - an acronym for get off my internet. (*side note - this is just like me. Ignore the two thousand and tune into the ten.)  The link the visitors were coming from had key words that made me curious- it was the name of one of my blogging friends, and it had the word "snark" in it. I wondered why in the world people would be coming from that site, and why my blog was linked with the word "snark" and this particular blogger. So I followed the links back.

Big mistake.

What I found were over 200 comments from women snarking on this particular blogger- disecting everything from her daughter's first-day-of-school outfit to her "fan girls" on instagram. They discussed all their feelings about her without restraint, and some predicted all kinds of ugliness for her future. I should have stopped when I understood the tone of this discussion...this wasn't a place of constructive criticism or even just "recreational gossip". It was hurtful, sometimes slanderous, and really just a lot of wasted dialogue. But my (stupid) curiosity got the best of me, and I kept reading- and found my name and my blog mixed into this "small snark".

I felt my cheeks burning as I read some comments directed at the size of our family, what church my husband pastors- someone had looked up my husband's name and posted a link to our fellowship of churches...someone else took portions of my birth story and copied them and commented that it was remarkably similar to this other blogger. (We had babies the same week and neither one of us knew our daughters would have Down syndrome. I'm willing to bet there are quite a few birth stories that sound similar to ours out there, and I promise I didn't plan Lily's birth and my reaction to reflect someone else's experience. Especially when mine happened before hers.) There were other negative comments, and I recognized one of the women as someone who left a comment here a few weeks ago completely misinterpreting a humorous post I wrote. I stopped reading and left a comment myself (another mistake) sort of defending myself and our family and saying I was sorry I had followed my site meter over.

The next morning I went back to delete my comment - I had slept well at the hotel that night and woke up feeling foolish to have even engaged in that forum. I couldn't find a way to delete my comment, but I did read a few of the responses to mine- one that stood out was simply "get over yourself."

And thus the title of my post.

I've come to a conclusion since reading those words - get over yourself.

She was right.

Maybe it wasn't the nicest choice of words, but that commenter said something that I needed to hear.

Because I really do need to stop focusing on myself. I really do.

I'm just being honest- that handful of comments on some random website had me wanting to quit blogging for a few hours. And as silly as it sounds, it made me want to quit doing anything that "puts our family out there" that would invite criticism. Including ministry, etc.

Because that is how completely over-the-top I respond to criticism, and it has always been the way I respond to negativity. Since I was a little girl I have always had a very, very hard time receiving correction, even when it comes in the most carefully worded conversation. I'm a perfectionist, and as such, I see any words that hold a threat of imperfection as a complete discrediting of anything good in my life.

I have a hard time - a very hard time - seeing the silver linings in life.

I've known this for a long time- prolonged thinking patterns like this can cause really ugly things...anxiety, depression, anger, guilt...and it can make for an unhappy marriage, and an unhappy mama, and an unhappy life. That all-or-nothing mentality is something I have had to daily surrender to God, and I have had to specifically ask Him to help me overcome it. It bleeds over into so many areas in life, and it can ruin a perfectly good day...many perfectly good days...until all I see are the dark clouds hanging above my life instead of the sun shining through in the midst of everything.

I really do believe that having Lily helped me so much- whether God intended that to happen or it just did, the truth is I have changed so much since her birth. It's hard to uphold an image of "the perfect mama" when you're struggling so hard to overcome grief. It's hard for someone who loves to have everything in order reconcile her expectations with a child who has extreme limitations, no matter how much I fight against those. Lily is who she is, and I cannot get past her extra chromosome no matter how hard I try. I can give her every single tool I discover to help her in life, but I will never ever make her "normal" - and I say that using the world's standard of normal.

And maybe some of the grieving we do as parents of children with special needs has to do with our own expectations, and our own feelings of limitation. Maybe some of it is that we just need to get over ourselves. I'm not saying there isn't a very real place for grief for the child we thought we were going to have... and the hurt we feel because we just don't want our children to struggle. And when that "magical extra chromosome" comes with a host of medical complications, of course there is cause for fear or stress or disappointment. Nobody hopes for that for their child.

But as far as the other part of grief- the part of me that maybe didn't want to be associated with special needs, didn't want to be "one of those moms", the part that just likes to go quietly unnoticed in life without ever having to deal with people staring or making rude comments or even the part that doesn't like for anyone to think anything negative about me or my family - that's the part that needs to get over herself.

And when I come back to the feeling of wanting to quit - that reaction to a handful of negative comments about me and my blog - what I'm faced with is why am I doing this anyway ? If it's about me, and how everybody perceives me and my family, then I should quit. We are busy enough, we put ourselves out there all the time just being in the ministry, and in all humility and honesty- I'm not that great at blogging anyway :) I'm too politically incorrect, too much into Jesus, too much of an amateur at writing, photography, etc...I'm just a mom.

But I'm also just foolish enough to put myself out there believing that God can use "just a mom" to help change the world. However pessimistic I tend to be, I have just enough of the-glass-is-always-full spirit in me to believe that you don't have to be perfect at this to accomplish something.

After all, Lily's readers have raised over $125,000 to help save orphans with Down syndrome. That's a pretty big deal to me.

Maybe some of you are like me, not high fliers, just moms trying to do the best they can with their families, and squeezing in some time to do something outside their typical sphere of influence. Or maybe like me you have a small blog but a big desire to advocate for Down syndrome or other special needs. Maybe you don't have a blog, but you read and donate and pray and take time to invest yourself in a cause greater than yourself. Maybe you too struggle with trying to "get over yourself" but a lot of times you find yourself just getting in the way.

Last week I had the privilege of meeting one of the orphans I helped fundraise for. I've watched a lot of orphans come home via the internet since I started blogging, but this was the first opportunity I've had to meet one in person. We dropped Mackenzie off at her friend Ashley's house on our return trip from California two Fridays ago, and I got to hold little Kamdyn for a few minutes before we got back on the road.

She was the sweetest little angel, and the whole time I was holding her I kept thinking how ridiculous it was that I let a few little "snarks" affect me the way I did. Really? In the big scheme of things, do I really care that much about what people think about me, that I would let it influence my whole outlook on life? On blogging, on my children, on our family size, on the ministry, on Down syndrome advocacy ? How foolish.

And when I came home to read sweet Jessie's email about the birth of her beautiful little girl Emma, I was so filled with shame. There are people really, truly going through tragedy in life- suffering that is unspeakable, and undoable without the grace of God. And I'm going to sit around feeling sorry for myself because of some negative comments about my blog.

Get over myself indeed.

And I wish I could say that little incident on our trip was the only time I have wanted to quit everything in the face of negativity. But as I said above, this has been a constant battle for me...getting over myself. Those comments weren't the first time I've read or heard rude remarks about myself or our family, and I'm sure they won't be the last. God help me to have the heart of a child, and the hide of a rhinoceros throughout life, and to recognize self pity and stop it in its tracks. God help me to get over myself. There are bigger issues in life than what other people think about me.

So there you have it. My thoughts spilling out onto the keyboard in a jumbled mess, but I do feel better now that they're here. And maybe I won't change any hearts out there, but the heart that needed to change sure feels better right now.

GOMI cats if you're reading this- thank you. Point taken, lesson learned.

laura, lily, and kamdyn  

Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable--if anything is excellent or praiseworthy--think about these things.
Philipians 4:8

Saturday, March 23, 2013

I mustache you a question

Although this post really could go on our family blog, I chose to use it here on Lily's blog. A) because it's so cute and Lily's blog gets more traffic, so I don't want people to miss it   B) it does have some adorable photos of Lily in it   C) Jason's birthday - my oldest, who turned 25 - coincides with World Down Syndrome Day, March 21st, so it's fitting to keep these photos together   and finally D) I'm the blog author, so I get full license to do whatever I want. So there.

Onto the pics...

Jason Christopher Rice, my oldest son, turned 25 this past Thursday. I CANNOT believe I have a child that old, when I am only 27 myself. He was named after my favorite (okay only) brother, Christopher, thus his middle name.

SO here are my oldest and my youngest (for now) on World Down Syndrome Day/Jason and Uncle Chris's birthday ....

Aren't they cuuuuute ???

We had Jason, Naomi, and Baby K over for donuts....

Jason asked for one of those thingamabobbers that suctions your cell phone to the windshield....helloooo hands-free Oregon...

His lovely wife Naomi bought him a bike on Craigslist and showed him the pic on her phone....

Can I just say I have THE most gorgeous daughter-in-loves on the planet ?? My boys picked good !!!

And now for the reason for the title of this post.

I am probably going to offend someone here.

It's not my intention to do so.



It's not.



Not on everyone else.

Well, some people.


Groucho Marx.

Hulk Hogan.

Al Gore.

But everyone else is fine.







It is a current source of contention in our home.

He grew one after not shaving for several days, coming back from Disneyland. Or rather, he's growing one. Mackenzie says it's a midlife crisis. I say it's disgusting. And Baby K says...well see for yourself :

He said very clearly - NOoooo.

Papa thinks I brainwashed him ahead of time.

I say the boy just has common sense.

Some people look good in a mustache. My husband is not one of them. I think it makes him look older, and weasly (I told him this!) and it feels grose when I kiss him (I've since boycotted that), and it changes his whole appearance. I want my Sammy back.

So consequently, along with boycotting kissing, I boycotted shaving my armpits. I'm not joking. And I can't believe I just admitted that on A Perfect Lily, but there you have it. Desperate times call for desperate measures.

He says he will shave it in a few days, and that he's never had one, so he's just trying it out for a week.

I hope he's serious, because I miss his kisses. And plus I'm starting to feel itchy.

So I mustache you a question - do you like his mustache ? Or do you, like me, think he looks a little bit like one of those old time slimy gangsters..... that ^^^^^   ???

Sam, if you're reading this, that's what you look like to me.

Marlon Brando called from the grave...he wants his mustache back.

Okay, moving are a few more CUTE pictures from that morning...

My grandbaby and my baby.


And that concludes this weekend's post. Please don't forget to leave your opinion in the comment section. For the record, Lily hates her daddy's mustache too. She hasn't boycotted kisses or shaving, but she told me this as I was typing.

For reals.

Happy Weekend !!

Thursday, March 21, 2013

26 minutes

Dearest Baby Emma,

I've only had the privilege of knowing you through your mama's words since last November, but I feel so connected to you because of them. You've been in our family's thoughts and prayers since the day your mommy introduced herself through an email. I've read her words out loud to my husband, or at least tried to... because most of the time I couldn't get past the lump in my throat. You have an amazing mommy, Baby Emma.

Tonight I received an email from her telling me all about you... how you were born yesterday at 6:21 a.m., how you were beautiful - big blue eyes, fuzzy blond hair, and a button nose... and how you spent 26 minutes in this world before passing to the next.

26 minutes.

In 26 minutes I could clean up the morning dishes, make lunch for all my children, tuck them into bed after saying our goodnight prayers....

But 26 minutes was all your mommy and daddy had to meet you, say hello, goodbye.

And yet I know from your mama's words that those 26 minutes were the most precious, most beautiful minutes of her life, and that if she had to do it all over again - knowing how hard it would be to let you go - she'd do it in a heartbeat...for those 26 minutes.

Tonight your mama is my hero, Baby Emma. Because there wasn't a shred of bitterness or regret in the words she wrote to me, but rather thankfulness.

"We thank God for allowing us those 26 minutes, minutes we didn't even know we would have.

 We sang to her, rocked her, and kissed her a million times. I whispered in her ear how much she is loved by us and by God. Emma knew only love while she was here on earth and that is what she taught us. Love bears all things, believes all things, hopes all things, and endures all things and that is what Emma has eternally imparted and imprinted on our hearts."

I have a hard time looking at the picture above, dearest Baby Emma. The tears in your daddy's eyes, and the tender way your mommy held you, studying every feature I'm sure, and storing the memories in her heart like pearls on a strand....I know every day that passes she'll treasure those memories, and no matter how much time there is between now and when she sees you again, she will never forget your sweet newborn smell, those delicate rosebud lips, the warmth of your tiny body in her arms.

And if I have a hard time just looking at that picture - of love and grief all mixed into 26 minutes - what did your mommy and daddy and grandma and auntie feel? I can't imagine what they walked through in those 26 minutes, cannot wrap my mind around that kind of emotion and experience.

But you know what I see in those pictures as well?

The grace of God.

He carries us through things we thought we never could endure, He gives us grace to bear the unthinkable, and He wraps His arms around us in our darkest hours...

He knows what it is to lose a child.

And even though I can't explain why bad things happen to good people, why there is suffering in the world, and why it seems sometimes that our prayers go unanswered...I believe God is good.

Life can be hard, but God is good,.

 I am so honored to have grown to know your family, Baby Emma, because I know right now they are going through the hardest thing any parent could ever go through, and that they are trusting in God.

"The grief that we feel is unspeakable and my heart and arms ache for our baby girl. But I believe that God is holding her now. I wasn't ready to let her go, but I pray she is at peace."

You had a host of prayer warriors ushering you into the world, sweet Emma. We held you in our hearts and held your name before the throne of God, and we were blessed and honored to be able to pray for you and your amazing family.

You lived for 26 minutes on this side of Heaven, but in that short time you made an impact on so many. Some people take a lifetime to do what you did. You've touched the hearts of so many with your story, and we won't forget you. We're praying for your mommy and daddy and loved ones, praying so very much for the comfort of God for them, and for that peace that passes all understanding.

I don't know what it feels like to have 26 minutes to say hello and goodbye to a child, but I do know this:

 He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.
Revelation 21:4

I'm so looking forward to that day, Baby Emma.

With all my heart,

Patti oxoxox

Baby Emma Update

I'm copying and pasting my sweet friend Jessie's email here...there are some people whom you've never met "in real life" who nevertheless leave a mark on your heart forever.

Jessie, if you're reading this - you and Tim are those people.

I'm honored to have had you share your heart with me, and I wish I had words to make everything better. I know that if we don't meet on this side of Heaven, you'll be one of the first people I seek out when we get there... you and your beautiful and perfect daughter, Emma.


Dear Patti,

  We welcomed our precious baby Emma into the world on Wednesday, March 20th, at 6:21 AM. We had her for 26 precious minutes before she passed from this world into the next. She was and is beautiful, with big blue eyes, fuzzy blond hair, and a button nose. She is our miracle baby whom we love and waited so long for. The miracle and gift of Emma's life is beyond all words. Tim and I are eternally grateful for those 26 precious minutes that we were able to hold her for before she went to be with God. We thank God for allowing us those 26 minutes, minutes we didn't even know we would have.

We sang to her, rocked her, and kissed her a million times. I whispered in her ear how much she is loved by us and by God. Emma knew only love while she was here on earth and that is what she taught us. Love bears all things, believes all things, hopes all things, and endures all things and that is what Emma has eternally imparted and imprinted on our hearts.

Tim and I are overwhelmed by the outpouring of love that we have received from you, your family, and all of Lily's readers. We thank you, from the bottom of our hearts, for all of your prayers and love and support.  We absolutely believe in the power of prayer and in the miracle that we have experienced. Emma's time on earth was too short for our human hearts, but we know that we have been given a gift of a lifetime and rest in the hope that we will one day be reunited with Emma again.

  Thank you for walking with us on this journey, one that we could not have done alone. We will be receiving pictures shortly and as soon as we receive them, I will be sending them to you. Thank you, Patti, for all you have and continue to do. We are forever grateful to you, your family, and all of Lily's readers.

With Much Love,

world down syndrome day

Dear Readers, 
As of this afternoon I have not received any news about Baby Emma... I promise to update you as soon as I know anything. Please continue lifting this family up in prayer, and thank you so much to all who have been doing so over the past three days.
Much love, Patti


Today I join thousands of other families who celebrate those who share an extra 21st chromosome...

I'm so thankful for this little girl and all she has opened our eyes to. I'm so honored to be her mama and to share this journey with so many who are equally blessed to have a loved one with Down syndrome.

Happy World Down Syndrome Day !