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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Friday, January 20, 2012

Special needs children are SPECIAL - even those with Trisomy 18!

Look at this picture of Lilly. (Taken August 2011.) Does she look like a "mutant" to you? Was her life a "ruined life?" Was she "unlucky to survive beyond a matter of weeks?" According to this doctor (OB), the "human loving choice" for the parents of children with Trisomy 18 is to abort the child. Because these children all "die in agony." And of course, the phrase we Trisomy 18 parents hear all the time: our children "incompatible with life."

I pulled the above quotes from the OB's article posted on her blog at: http://pegspot.blogspot.com/2006/03/trisomy-18.html (Thanks to Giuliana's mom for posting about this article.) I was rather taken aback at the descriptions this OB used. Yet I do know that really, she shares the most common viewpoint out there, in the medical field. We were offered an abortion with Lilly. Many in the medical field don't have the experience with any positives of Trisomy 18, and probably most don't have any experience at all with it. And perhaps those who do not look on these children with compassion have not experienced the love and grace of the Lord Jesus Christ in their own lives. Thankfully we were able to put together a team of doctors to work with Lilly that ended up becoming some of her biggest cheerleaders. We parents of Trisomy 18 blessings continue to have our work cut out for us in advocating for our children.

As I skimmed the comments of this OB's blog post, I saw that most people agreed with her. However I was surprised and thrilled to see a comment by "JPD Blogger" which mentioned my Lilly! As I read her post I remembered talking to this dear woman on the phone while Lilly was at Wolfson Children's Hospital in Florida the first time, when she got her NG tube and pulmonary artery band. She is a friend of one of my aunt's friends. I was saddened to later hear that she lost her baby, before its due date. I imagine that little Sheryl Grace has met Lilly by now and how special for them to know that their mama's talked on the phone together about their precious little lives and how we would do anything we could for them.

This article's attitude goes along with a post I've had in mind for awhile on special needs kids. Are these kids a draining and exhausting amount of work such that it would honestly be a relief not to have to do anymore? Or are they truly a "special" blessing? Having had Lilly and now not having her with me any more, I will answer "they are TRULY SPECIAL!" Yes Lilly was a lot of extra work - though as I always put it maintaining her medical equipment took more work than she herself did! But caring for Lilly and fighting for her was probably THE most rewarding thing I have ever done in my life. She NEVER felt like a burden to me. I never even wanted a break from her! I hated leaving her home once a week to grocery shop for an hour. (I didn't take her because of the germs!)

Lilly was the most patient, content, courageous, and joyful little child I've ever known. And the toughest! She had a higher tolerance for pain that the average man! Kissing Lilly's neck and having her smile back was all the "payback" I needed. I had hoped she would live for years and I looked forward to continuing to take care of her every need. Right now I am missing stopping what I'm doing every hour to hour and a half to feed her. I miss changing her diapers. I miss getting to pick her outfit each day and calling in big sister T. to do her hair. I miss sitting at the computer typing blog posts and checking email without Lilly in my lap. I miss seeing how much H. enjoyed when Lilly was awake to do preschool with us. I miss carrying her around in my wrap. I miss bathing her. Having her in my lap at church. Strapping her into her car seat. Doing physical therapy with her. Seeing her face light up when her daddy came home from work each evening. Playing with her at night in bed while everyone else was asleep and us just grinning at each other. I miss laying her down at night in her bed next to me and whispering "Good night Lilly - mama loves you! God bless you!" I could go on and on. We often said, and still delight to say, that "Lilly was a gift from God", and of course, every life - every day and moment of every life - is indeed a gift from Him.

These are things that any loving parent would miss about their child, if their child was suddenly gone from this life. Just because special needs kids are different than the "normal" child - our love and devotion is not any less towards them.

Taking care of special needs children is not something to be feared or dreaded. It is a wonderful experience. Sadly, many of our "progressive" world consider any child to be a greater burden than a blessing. But God's word says otherwise: all children are a blessing from the Lord. (See for example, Psalm 128) Yes, life with children will generate moments of being exhausted, perhaps moreso with children who have special needs. Or feeling overwhelmed or frustrated as you learn how to work yet one more piece of medical equipment or figure out a better way to care for them. Or defeated as you can't figure out what's wrong.

But it is ALL worth it. It is life changing - for the better. It is character refining. It is performing the Lord's work. Just as with parenting of "normal children."

"And if anyone gives even a cup of cold water to one of these little ones because he is my disciple, I tell you the truth, he will certainly not lose his reward." - Matthew 10:42

There is a little boy named Shaun in an orphanage in Russia. He is 4 years old and has Trisomy 18. I am astounded that he has lived that long in an orphanage! Our family we would love to adopt him if it were something we could financially swing at this time. Now most people in the world would probably think that's crazy! Not only is he special needs but he has Trisomy 18! Not a "good investment" of anyone's money. Right? We'd love to bring him home and let him feel loved by a family. But I do wonder if right now, if he isn't the most happy little boy in the orphanage. It seems that all these children with Trisomy 18 that I meet or learn about, are just so happy! More happy than any of us that carry life's every day burdens. We are a jaded, hardened people. We are all in need of God's grace and love to help us love one another and find joy in the life He has given us. We should all be admiring of the pure love and joy of special needs children, and ask that God would help us "become like little children" in these ways.

6 comments:

  1. No child should ever be called a burden no matter how sick they are or how misbehaved they act. Every single child is a perfect gift from God and women who have abortions have all made the wrong choice. Satan is a liar and a deceiver who twists and turns the truth, he makes us believe our own lies and no matter what we tell ourselves we can never rationalize abortion as being the right choice. It is not our choice to make. Abortion in any way shape or form is wrong and will always be wrong. Lily's story will hopefully be an inspiration to many parents of Trisomy 18 children and I am blessed to see this little bit of her story here! Thank you Lord for your grace and mercy and for showing us that when we are living your will for our lives we will be content!

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  2. I almost feel like I bust into flames when I hear people talk against trisomy 18! I feel like sending firey comments! :( I feel like screaming, 'you think they're incompatible with life? Look at these smiling kids then re-think that!'

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    1. You're the best, little granddaughter!

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  3. Well you got me to read the posting from the "doctor" and I responded more like Jesus when he was talking to the Pharisees and lawyers...or when he grabbed a whip and drove the people out of the temple. I don't think she will like what I have said as a post, but hopefully she will leave it up so parents who run across her article see my response. By the way Tabby, I did burst into a controlled flame. :)

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  4. I have been following Lilly and other children for sometime. My heart just goes out to them but also to the brave mothers fathers and other family members who care for these wonderful kids. I read Faiths comments to the "doctor". Well done.

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  5. God doesn't make mistakes. Each life regardless of the time that they are here or disability should be valued. Because each life is a gift from god. And regardless if they live 100 years or a minute each life has a purpose. I have a disability now, does that make my life worth less than someone healthier? Should a parent be denied hope because Doctors choose to go against the Hippocratic oath? First Do No Harm.

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