Saturday, March 10, 2012

and it's also about LIFE

This post wasn't supposed to be part of my series on prenatal testing for Down syndrome. I had another post scheduled today, and I will put that up tomorrow.



My intent is not to judge anyone who has chosen choice over life. My heart is heavy for these precious children who can't speak for themselves, and I find my heart doing the talking today.


I am for life, no matter what form it comes in.



I am for life when it means a baby has a grim outlook.

Addison



I am for life when it means that baby may grow up to be severely disabled.


Sasha is a precious little gift from God.  He is 6 years old, but is not able to do much of anything right now.  He is very much still a baby.  He may have CP as well, but is considered severely delayed.  He does a lot of rocking…in his crib, in his stroller…to keep himself occupied.  He has teeth marks in his tongue from chewing on it from boredom.   We do not know if he truly has autism, or he is just so severely impacted by the CP or other birth trauma that the caregivers can't really do much with him, and he turns to himself to soothe.


Sasha desperately needs a loving family, and experienced, patient family who can celebrate every step of progress as a miracle of God!   I can't wait to see the person he becomes when he has a family to love him and encourage him.  He will surely remain bedridden for life if he is sent away, and he is facing that soon.








I am for life when it means a child won't be beautiful- by the world's standards.


Kacey has Apert Syndrome.

From an adoptive family who met her in August 2011:  She is very active despite her limitations with feet and hands- she kept up with the whole bunch. Very determined, a bit shy.
From an adoptive family who  met her in November 2011: Every day she'd walk up to me and say, "Mama?"  It broke my heart to tell her no. 





Jeanne has a birth defect of her eyes.  We do not know anything more than that at this time, only that her vision is impaired. 




I am for life when a child may never feed herself- ever.




Milena is 3 years old. She has had heart surgery and her heart is fully repaired. She is currently fed solely through a nasal-gastric feeding tube. She weighs just 11 pounds. She is significantly delayed. She can roll from back to stomach and sit for short periods of time with support. When placed in a walker, she can not move it with her legs. She will pick up toys and hold them when they are handed to her. She plays with them by knocking them together or shaking them. She makes eye contact and tracks moving objects.






I am for life when a child may never walk or run or jump or play.


Jaxson and his mama


"Jaxson has changed our lives, and the lives of so many others. He makes us better, more compassionate people." ~ Lacey Rugg




Katie Musser

“Our daughter Katie is almost ten years old. She is the size of a two year old and functions on the level of a three to six-month-old. Her brain and body were irreversibly damaged by years of deprivation on every level. She is completely dependent on us for her care. She understands very little language. She wears diapers. She’s non-verbal and tactilely defensive. She cannot walk, crawl, suck or chew. She cannot feed herself or dress herself. She takes all her liquids through a feeding tube. If she becomes very upset, she has a tendency toward auto-aggression. She has some odd habits, makes various socially-unacceptable noises, and does not regulate her emotions very well. She has difficulty maintaining eye contact. She is learning to tolerate toys, and has progressed to shaking a rattle. She has extremely fragile bones and must be lifted and handled in certain ways.
 
That sounds like a daunting and scary list doesn’t it?
 
What that list doesn’t tell you is that our daughter came to us bearing gifts that have enriched our family in ways nobody could possibly measure. She loves life. She is sweetness personified. She has personality, opinions, spunk. She has taught us how to understand her without speaking one word. When she was sick and her smile and giggle disappeared for a couple of weeks, a cloud hung over the whole family. Since she joined our family a few months ago, our tiny survivor-girl has caused the love in our house to grow exponentially. Now we cannot imagine our family, our life, without the priceless gift of Katie.”





I am for life when a child is given just a few years to live...or just a few days...

Max June 1-16, 2011



"Today our little Maximilian was born.  He was utterly beautiful, and we celebrated his safe and triumphant delivery.   It was such a happy, joy filled day."  

And that is what I choose to remember on the 1st of every month, the overwhelming joy Max brought to our lives.  If I had to do it all over again, and had to face the same outcome, we would without hesitation or reservation. 

 My life has been forever changed by our beautiful son, no one is too small to make an impact on the world.  And that is what Max did.




 
I am for life even when it means that my life might be completely turned upside down, inconvenienced, possibly never be the same again.




I am for life whether a baby has - as one doctor told me after Lily was born- "the Cadillac of chromosomal issues" (Down syndrome)... or if it has Trisomy 13 or 18.




I am for life.




And it may make me sound judgmental, because women's choice is involved. It may not make for a popular message or blog post. It may make people feel guilty - but that is not my intent. My desire is to be a voice for ALL life, to make a stand for those who are rotting away in orphanages on the other side of the ocean, as well as those who are lying safe and protected in their mother's womb.



Because who decides which life has value?



I fully believe we need to shine brightly the message that our children are beautiful, are capable, are worthy of life- because they ARE.



And so is this one...


Ryan Berhar


 "When my firstborn son was just 11 months old, we got the diagnosis that changed our lives forever. We were told that our child had SMA; which is short for Spinal Muscular Atrophy. A genetic, neuromuscular disease which has no cure. He would never walk, crawl, stand or do anything independent of us. And we were told he would probably only survive for 3 years."





"Ryan has been in and out of the hospital more times than I can count. Because of the weakness throughout his body, swallowing and clearing secretions from his airway are very difficult for him. He can catch pneumonia from what others would experience as a mild cold. Because of this, we have to be extremely careful in protecting him from germs."


"SMA does not affect the mind. Ryan attends a normal high school and is currently a sophomore. He has a 1:1 nurse with him at all times. SMA in many ways is like being paralyzed; meaning that he needs someone to do just about everything for him. Toileting, showering, dressing, brushing his teeth and even positioning him in bed at night. He usually turns on average about 5 to 8 times per night. Sleep in our home is broken up much more than it has been for any of our newborns ever was! But, most nights we have an attendant to help turn him. He still has feeling, so he lets us know when he needs to be turned. I rarely lose my patience with him as all I have to do is imagine myself in his shoes. I cannot imagine laying in bed and being unable to move at all or scratch an itch. Having said that, this disease is challenging every single day of our lives."
 





 "Overall, Ryan is a very content and happy young man. He will be turning 16 in just 10 days. A milestone we never thought we'd see! And we couldn't be happier to have him in our family. He is an amazing kid with an amazing attitude about life. And he knows that even though his earthly body does not work like it should, his heavenly body will."





I am for life.


For you created my inmost being; you knit me together in my mother's womb. Psalms 139:13


Before I formed you in the womb I knew you. Jeremiah 1:5

38 comments:

Crystal said...

Love every one of those beautiful children in the photos! Joining with you in prayer for all of them.

Jennifer said...

Love this! :) Sweet little Milena is going to be my neighbor!!! I got to meet her mama & daddy (and siblings) last week at our pizza fundraiser!!! :) So excited to have another RR family in our area!

Heidi Ehle said...

Amen, mama.

melissa said...

<3

Lexi said...

Oh my. I'm a mess. So beautiful. So heartbreakingly beautiful.

nicole said...

I am with you 100%!!! Such a powerful post. When I first started reading blogs of families who had a member with DS, I still thought it would be scary to deal with and not something I felt capable of handling. Don't misunderstand me, I would never, ever think of an abortion if I received such a diagnosis, it was just that I knew I would be very scared of that diagnosis. And yet, there was this recurring theme on these beautiful blogs about the abundant blessings that accompanied the challenges. It became obvious that the intangible gifts these children brought to their families were worth every sacrifice. I always loved and admired the children with DS, but I noticed that my mindset was changing from "I'm not sure I could handle that", to "I would feel grateful if God blessed our family with a child with DS". I would still feel anxious but armed with so much encouragement and good information and GOD, I know we could do it. This is the power of your witness and words, Patti. This is the power of a loving Mama's courage to share the convictions of her heart and I am so proud to call you Friend. I pray others' hearts will be softened and transformed until they see the only "choice" is for life.

Rachel said...

AMEN to all of the above.

cara said...

Thank you for posting your heart Patti!! I totally agree with you. No matter what special needs the baby may or may not have, I am for life. Life is not for us to take. We did not create life, and we do not have a right to take it. But sadly, our world buys the lies. I bought them when I was young; I was told that babies were not babies at first. They were just a blob of tissue. I did not even think about God creating that baby or what I believed was a blob of tissue at the time, and I did not even question the knowledge I was given. I just believed until the Lord opened my eyes to the truth. That is why it is SO important that women are educated whether they believe in God or not. Yes, God opened my eyes and lifted the veil. But some women that do not believe in God and are pro-choice will still choose life when they might abort if given correct information. It is about saving lives. And that is why all of these posts are so important about these tests. Correct information needs to be out there for more and more lives to be saved. And kids with special needs, especially down syndrome for some reason are targeted for this. You are helping save lives by this Patti. You are being that voice for the voiceless, and I am SO thankful you are choosing to do this. And even if that life does not look as cute and sweet as the face of a child with down syndrome; even if that child will never smile or move or whatever, that child is a gift worth fighting for. That child will change the lives of the people that take care of that beautiful child. But regardless of any of this, that child has a right to live and have life. We cannot take that life.

Some verses I read this morning from Isaiah chapter one:

"Wash yourselves, make yourselves clean;
Put away the evil doings from before My eyes.
Cease to do evil,
Learn to do good;
Seek justice,
Rebuke the oppressor;
Defend the fatherless,
Plead for the widow."

I actually was thinking of your posts when I read these this morning. And I thought about how firm I am about calling abortion murder and speaking so strong about it. NO, I also do not want to make people feel guilty or hurt somebody. But this is about the lives of babies that our world is snuffing out. If we do not fight for them, who will? They have no voice. We need to call this what it is and educate women better that have no belief in God or choose to not listen to what God has to say about this if they do say that they believe. Many would make decisions for life if they were given the facts and receive true knowledge. It all begins in the home too. Sadly, an 11 year old girl recently told my 12 year old son in their interesting talk about many things that she would abort a baby if she ever got into a bad situation. My son gave her a very graphic education right there of what abortion was. She then told him,"No, it is just popping a pill." He spoke to her about the Bible and God. But how terribly sad that this young girl is already set up to make a bad choice by sleeping with somebody before marriage and to kill that baby if she does make that mistake. What are we doing?? Even if you have no love of God and you are pro-choice, why are we setting up our children to kill their babies that we are lying to them and telling them they are not really babies. And why are we not expecting more of them than to sleep around?? Okay, okay, I am done now that I have written a story on here Patti and starting to go all over the place. Yes, this is dear to my heart. Love you and everything you fight for.

Team Lando said...

Whew, now I'm in tears!

Michelle R. Slape said...

Wow!!!!!!! Magnificent post!!!!!! As a mother of a child with Down Syndrome, I thank you!

Jenni said...

Written beautifully. I agree completely. Each of these children are so precious.

Deanna said...

I think it's so easy to stay away from a topic because it's not bright and shiny...or popular...or comfortable. But sometimes those are the ones that need to be shouted the loudest. Thank you for being that person. For unapologetically standing up for what you believe in- for fighting for EVERY life.

TUC said...

Oh Patti, blat... I am sitting here crying. I am so happy you posted this. Being pro-life means fighting for life after the womb as well, and you have done today.

Jenny said...

I am in tears. This was beautiful.

Rochelle said...

Amen, loving these posts!

poniegirl004 said...

Every life is a blessing. Thank you for posting what is in your heart.

Kristi said...

AMEN!! That was a beautiful post!!!!

Anna Theurer said...

Thank you for posting this! Sasha has been so heavy on my heart for months now. I pray that his family will find him soon. Also, thank you for including Kacey. So many people fear Aperts syndrome because not much is known about it. Nearly 30 years ago, my cousin Patrick was born with Aperts and the OB literally said to my aunt & uncle "this one is not compatible with life". Well guess what, Pat was/is a fighter and he has brought such joy to all of our lives. I am praying that each of these orphans finds a home.

Mikaela said...

Such a beautiful post highlighting so many beautiful families. My daughter has a rare genetic disorder, and her life, just like all of these other amazing children's lives, is one worth living and celebrating. Thanks for sharing these stories.

teal915 said...

me too! Great post : )

DebW said...

Excellent! I'm for life too!

Jacquelyn said...

Hi, you don't know me, but I have been reading your blog for awhile and I appreciate these posts so much! You see, I was born with cerebral palsy. Before I was born, the doctors told my mom that if she didn't abort me, we would both die. They told her to think of my older brother's quality of life. Instead, she told them she would rather go to Heaven with her baby, and we both survived (obviously!). Then, they told her I would never walk or talk or function in society, but not to worry, there is institutions for people like me. She took me home, and fought to give me the best life possible. Now I am able to walk, and talk, and am just as capable as anyone else. I do use a wheelchair to get around also, but my disability doesn't define me! I am so grateful to God for making me just how He designed, and for mothers like my own, and you, and others who are willing to stand up for their children and fight! Thank you. For the record, I am studying to go into special education, and am passionate about special needs children, it is my dream to adopt a child with Down Syndrome one day, one of my dearest friends was blessed to be born with Ds. God has had a plan for me since before I was born. Thank you for these posts and for speaking up for those who cannot.

Becky said...

I am for life too...beautiful post. And the comment made by Jacquelyn brought me to tears. Absolutely inspiring...

Leah said...

Lovely post Patti! I too am for life & Jacquelyns comment made my day.

Julie said...

Beautifully written. I am for life, too. :)

Lily's Dad said...

All you have to know about the value of life would be resolved with one look in Lily's eyes! Thank you Jacquelyn for adding your unique perspective about the value of every life. I wonder how many doctors have said those same words to thousands of women who did not have the Christian courage that your mother had, and ended the life of a child that could have turned out to be some family's wonderful blessing. We thank God for people like you and your mom!

Danielle said...

O o o. Loved Jacqueline's comment. So neat to hear her verbalize from her perspective. Loved this post. Lived that although you were willing to post Lisa's yesterday, today you followed up with your convictions, in spite of Lisa's perspective sounding pretty darn good! Yes she has a point, but your point today needs to be shouted from the rooftos!

Shauna said...

Amen!!

We Can Do All Things said...

This is a beautiful post Patti!

cara said...

Had to come back and say to Jacquelyn that I am SO thankful you chose to comment and share your story. It truly needs to be heard from you and how grateful you are for the life God gave you. What a blessing to read this today!!

just gina said...

God bless you and this powerful post. May these words reach hearts and open them to all life.

Kara said...

Beautiful

Elle's mommy said...

Amen...tears tears and tears...thank you for writing about this! Truer words, I doubt have ever been spoken. Jesus, bless each and every family and be with each and every person that reads this...open our eyes Lord, open our eyes...

Elle's Mommy

Anonymous said...

I didn't know cerebral palsy could be detected prenatally. What kind of testing did your mother have, Jaqueline?

Jacquelyn said...

Oh sorry, that was unclear. They didn't know I had it until I was a few months old, they just knew I had some sort of disability. The reason that the doctors were urging my Mom to abort me was because she had a blood clot leading to the placenta. This threatened her life, but the operation to fix it would kill me. So they wanted her to abort me so that they could save her life. She refused to abort me, and refused the surgery, and God saved both of us, instead :) but the blood clot is likely what caused my cerebral palsy, since it resulted in a lack of oxygen to me before I was born. Does that make more sense? Sorry for being unclear!

Jacquelyn said...

Also, I know my situation is different than that of those children threatened by prenatal testing, but I felt I should share just to give my perspective on the issue. My mother could have died by choosing to give me life, yet she still did. The doctors wanted her to abort me even though they didn't even know I had cerebral palsy. And after I was born with it, they didn't think I was worth more than a life in an institution. My point was that every life has value. Every life is worth a chance. And I wouldnt be here to tell you that if my Mother hadn't risked everything to give me that chance. And now the baton has been passed to me, to spread the word that all children, regardless of their abilities or diagnoses, deserve life. So again, thank you for fighting for all of us. Life is a gift that I am thankful for everyday!

andrea said...

All I can say is Amen... Amen.

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