Monday, January 24, 2011

True Advocacy

Dearest Lily,

Yesterday I had an epiphany...


Daddy ministered during our morning church service on pain and suffering, and how they are both inescapable in this journey we call life. He talked about how God is not the author of tragedy~ but that He uses it to bring us closer to Him and to minister comfort to others.

During the sermon my mind kept going to the children we know, who are experiencing pain and suffering so horrible we can't even imagine it. Olga and Kareen and Peter are never far from our minds. We live each day with the hope and prayer that soon they'll be rescued and placed in loving families...and that the nightmare that was their life for so long becomes a distant or forgotten memory.


So while I was thinking about these children, who have become so dear to my heart they feel like my children, I kept coming back to your diagnosis.

Sometimes I go through incredible mental gymnastics, trying to make sense of it all, Lily.

I've said it before~ I prayed for you to be born without Down syndrome. I prayed for so long during my pregnancy, and poured my heart out to God, asking Him to do a miracle inside my womb...if you did indeed have that extra chromosome. I prayed long before you were conceived for you to be healthy and "whole"..and I specifically prayed for you to not have Down syndrome.

And for those who would say that your diagnosis came as a lack of faith...I had all the faith in the world that God would answer my prayer. I had prayed the same for 9 other babies before you..none of whom surprised us with a little something extra like you did.


So here's how my mental gymnastics go...I prayed for something specific, and God gave me you.

I felt God speak to my heart during my pregnancy, "If you ask me for bread, will I give you a stone?" At some point during my pregnancy- I could not pray anymore that God would "heal" you. I would get to that part of my conversation with the Lord...and just feel this huge check in my spirit. It was as if I knew I was having a girl, but I was praying for a boy. That's how strongly I felt~ that if I were going to pray against something, and ask God to take something away from you...I would literally be asking God to give me another child.

I'm not saying I would ever tell a pregnant mama to stop praying for her child to be born without Down syndrome. I'm saying I hit a point in my pregnancy when I personally could not bring myself to pray that prayer anymore ~ and feel right about it.


So yesterday while I was listening to your Daddy's sermon, and contemplating suffering, and Olga and Kareen and Peter, and Down syndrome, and life... just really became clear to me.


You are not suffering.

You have a wonderful life, a family who loves you, a safe warm home, all the medical help you need, you are treasured and valued and accepted...and the worst that could happen to you, as far as having a diagnosis of Down syndrome, here in America... that you be called a name. Or made fun of. Or rejected. Or stared at.

And while those things are not pleasant, and I do hope with all my heart that our culture changes, and that people really do become aware of the fact that a life lived with Down syndrome is not a death sentence or a tragedy...

...while I advocate and educate and write and speak and do all I can to bring awareness to the fact that a child or an adult with Down syndrome is a gift and a treasure, and yes, even a blessing...


There is so much more to be aware of.

There is true suffering in the world, the kind that moves the heart of God, the kind that hurts to look at or read about, the kind that deserves our attention and prayers and action.

And while I applaud every effort of those who would rally around the cause of awareness, and who hope to create a culture where you and children and adults like you have every opportunity to "realize their life aspirations and become valued members of welcoming communities"...


...we are not suffering.

You and I have a lifetime of blessing ahead of us, dearest Lily.

A life that Olga and Kareen and Peter and others like them will never know, without our help.

Forget acceptance and opportunity and aspirations- right now these children don't even have a shot at LIFE.

And yesterday I determined that I don't care how unpopular heralding a sad story might be...

These children need us.

They have no voice.

They are helpless to speak for themselves, to alert the world of their plight.

They have no mommies or daddies to advocate for them or defend them or teach them that they are of value, they don't even know what it is to be loved, let alone "accepted".


And so, dear Lily, once again I am thanking God for giving me you.

For in that gift, I have also been given perspective.

Life is not wrapped up in what I can gain, or what I can accomplish...or even in what my children can accomplish.

Life is about loving God with all my heart and mind and soul and strength, and loving others more than myself.

Thankfully and lovingly yours,
Mama oxox


Rochelle said...

Never a sad story here sister! Just the sad truth of a broken world.
Don't stop what you are doing even if others don't understand.
God is doing great things!

Mrs. K said...

Patti, I cannot believe how big that jumper is on Lils. When I was wrapping it to send I thought..oh well, Patti can save it and give it to some new born in her church 'cause this is going to be too small. I went today and held Layla Joy, as Jade calls her, and knew that is how big...err..I mean small our Lily is.

Yes, we are ALL blessed to have Lily in our lives. Just wish we lived closer. But thank you God for modern technology and being able to see my babies via blogs, video and Skype.

BTW I thought Kareen had a forever family. Didn't you show the family in one of your blogs? What happened.


Sydney said...

How Beautiful! You are exactly right. We have to be the voice for the children who have no other way of being heard. FYI, I am dedicating my Wordless wednesday post for this Wednesday to Reece's Rainbow children. I hope we can all raise some money and prayers! God can make any dream a reality.

Patti said...

Yes, Kareen does- we are still praying for her til she gets to them:) It will be a few months til that happens...

RK said...

So good. And so true. Kind of makes me wish I'd have been able to hear that same sermon. :o)

Thanks for sharing!

sunnylattegma said...

Amen, Patti. Amen.

Naomi said...

It was a VERY good sermon... Thank you pastor!

Anonymous said...

They are not suffering!!! I love that. Beautiful post.

Danielle said...

I missed the sermon as I was in nursery - but what you say is so very true. and $100,000 dedicated to AWARENESS - it will never be ok with me. One HUNDRED THOUSAND DOLLARS. It makes me sick. All the babies that could have been saved. and you are so right - no one is suffering like those babies are. You hit the nail on the head.

P.S. I love the photo shoot from your previous post. love it

nicole said...

Love. this. post.

Ashley said...

I totally agree!

Deanna said...

I love the pics of Lily standing.

I'm glad you posted this. I have been struggling all evening with a pregnant friend posting specifically over and over again that the most important thing is that her baby be healthy. I want to do a post about how no, that is not the most important thing. The most important this is for us to prepare our hearts and lives for whatever perfect baby God chooses to send our way because sometimes the best thing for us is an "unhealthy" baby. But I know it will make her upset, so I chicken out.

I'm glad you were brave with your post. It needed to be said.

Continuing in prayer for Olga. My husband asks every day if we have an update about her yet.

Unknown said...

I can't add a word to that except... amen! love you.

nicole said...

I have to add this: I have never, ever felt sorry for Lily because the blessings in her life are so very obvious, specifically her beautiful mother. From the start, I thought "wow, that is one blessed little girl who gets to live in such a loving family and be cherished for the beautiful child of God she is."

patsy said...

beautiful i try to type through tears...truly beautiful.

Kellan's momma said...

Very, very true. I never thought about it that way, thank you for opening my eyes,and making me even more grateful...

Anonymous said...

I am torn... I agree that these children need help so much - and I am advocating for them in every way I am able... but at the same time, I cannot dislike someone or be mad at someone because they have chosen to advocate for something else. We don't know how God will use her platform, but I know that I was first introduced to RR through her blog. I was also introduced to your blog through her blog. What she has done for children with DS is wonderful and I don't think that it should be looked down upon because it isn't what someone else would do...

My cousin has DS. He's 34 years old and lives in Wyoming with my aunt and uncle. I was able to visit with my uncle last summer, and he told me some of the things that my cousin has had to face in his short life - not the least of which was having a doctor recommend that he have half of his tongue removed because it sticks out of his mouth and bothers other people. My aunt, of course, left the doctor immediately and did no such thing. That is just one of many stories he shared with me. Maybe, just maybe, if children with DS in the US became part of mainstream America, where they are no longer stared at and made fun of, or treated like animals without feelings, then maybe adopting a child with DS will become the norm... and maybe then all the children on RR will find a home.

Maybe I'm just a dreamer. But I thought that God worked all things for His good.

cathy said...

Patti, I so agree with what Nicole wrote---
What can we do now, in addition to prayer & spreading the word about those poor children across the ocean?


Patti said...

I searched my post for words that indicated that I dislike anyone or am mad at anyone...I hope nobody is reading something into my words that I did not intend. In fact what I did say was: "while I applaud every effort of those who would raise awareness..."

I am a true believer in God working all things together for the good, and I hope that people reading all of my letters to Lily would see that trust and faith woven throughout them. I'm sad that making a stand for something I feel strongly about would cause anyone to question my faith in God.

According to RR..the thing that stands between these children and a family is plain and simple: money.

I am so sorry for the injustices done to children and adults with Ds in the US...I want to see a more inclusive culture here as well. Having said that, I don't know that handing piles of money to ANY organization is what is going to "fix" that. This is no slam against the NDSS. It's just to say that my conviction- and again this is what God has laid on MY heart- is that I want my money and my efforts to go directly to the most desperate need. Others can do what they feel is best and if that is truly the "cause" they feel is most important, that is certainly their prerogative.

This is going to sound oversimplified, and I hope it isn't viewed as "looking down on someone". But if I saw a child drowning in front of me and knew that it would cost $100 to save him that moment...verses handing $100 to a group of paid employees who would decide how to spend that money over the next ten years in the hopes that one day more children like that drowning boy would be saved...I would put my money on the boy drowning right in front of me.

nicole said...

I've been thinking about this raising awareness thing and I thought about the community I live in. There are only 2 children in the whole community with Ds and while I am from a small town, that is a very low number. How have these two children affected our community? The older boy goes to school and is surrounded by children who treat him with total respect and kindness. His peers are learning very naturally that everyone deserves goodness and compassion. The young 1 year old girl who has had many health issues has pulled much love out of our hearts. She and her family are prayed for, provided with meals, and given any other type of assistance needed. That little girl won our "Cutest Baby Contest" at the parish festival. This is the impact that two children have made. What if the numbers were much larger ~ wouldn't that cause even bigger waves of love. Mostly, all we need is these children to simply be born and allowed to live to bring about awareness. Once they are in our midst, their sheer presence changes hearts. And that is what our country and our world needs more than anything, a conversion of heart to see the value of all life. Saving these little souls from abortion and rescuing them from a hopeless existence will open our eyes.

Lord, I beg you, help ME to see and to act.

Lacey said...

Beautiful post. Although I know Jax suffers more, its not because of DS. Arina is having so much fun, there definitely is no suffering there! Children, thats what they are!

cathy said...

Patti, your words were eloquently written & completely interpreted, by me, in which the manner you intended them to be. I understand & totally agree with what you have written, as well as Nicole.
The Ds children & adults in our community are respected, loved and treated as peers.
Your analogy about a drowning boy is spot on.
With that being said, I am putting a post in our church bulletin about RR. It can only help.
Also, Kevin (little--HA) is doing another dress down day at his school---he just got the ok, for Olga


Race Bannon said...

"...I would put my money on the boy drowning right in front of me."

I have been to numerous water survival training courses...NEVER have they suggested giving a drowning victim $100! If anything it would weigh him down more, or confuse him.

I'm just sayin...

Patti said...

Race, I am so thankful for your vigilant monitoring of my comment section!:)
I will rephrase that, just for you...
I would jump into the water to save him, at the expense of my $100 running shoes...and if I found out the lifeguard didn't allow short scrawny mothers of ten to go into the water...I would give the money to a tall buff mom to do it!

I am sure there is flawed logic there somewhere, and if you (Race) aren't out saving the planet from unabombers right now, you can come back here and point it out to me. I'm an easy target;)

Anonymous said...

Well, I tried to leave a comment yesterday, but I could not get my computer to work or get it to go through. Now, after reading all of these comments, I completely agree with what Nicole said. I think that having our babies with down syndrome and loving them passionately in front of everyone IS bringing awareness and shining their beautiful lives to those around us. I think that will help women who would abort a baby with DS to hopefully NOT choose that path. That is probably for a whole other conversation that breaks my heart. But having them and loving them like you are doing Patti, and blogging about them IS bringing the awareness of how special they are and shows everything they are so capable of doing. I totally agree with you!! God's heart, that we read about in His Word, is for the orphans- the NEEDY! How can we look away when we see that they are in immediate trouble now?? These precious children are put into institutions if not adopted where they will be chained to metal cribs for hours at a time and tortured and left to defecate on themselves. It is truly heart breaking!! I wish I could rescue them all, but if all of us that know about this come together and take a stand against this and do what God has enabled us to do for these children, then this WILL change. And I just wanted to say something to the anonymous person that commented- I am not sure where you got that Patti was disliking a person or mad at a person in this post at all. She is sharing her heart about these orphans that need our immediate help NOW. This is emergent for them. Because of Patti's love for people above herself, she is being faithful to the call of God in her life and helping to save these children. I am so thankful for Patti and her voice to stand up and do something for these suffering, and I mean really, really suffering children. This is life or death. And I personally KNOW that Patti is not doing this without a cost. She has put much on the line, and yet she keeps doing it, because she cares more about them than herself. Thank you Patti for speaking the truth with love. Can you imagine if every child at RR had a full grant fund?? Wow, I believe that every child would be adopted because most people just do not have the funds. This money is for their lives. And Patti- you amaze me- you have ten kids, you are a pastor's wife; you are a busy lady. And yet, you are taking the time to do everything you do!! May God richly bless you. Love you, Cara

Anonymous said...

Patti your words speak so much truth and no, they might not be the words we want to hear but they are most certainly from Him. Often we miss the Truth because it doesn't come wrapped in a perfect package, but if we trust Him - realizing that it's not all about ourselves - He will show us the way. Thank you for your faithfulness, for serving as a voice for those who so need one and for sharing your obvious love for all of His children.