Trisomy 18 awareness is suddenly up

Americans have suddenly become interested in finding out what Trisomy 18 is. Presidential candidate Rick Santorum's daughter Bella was hospitalized a few days ago with pneumonia. Thank God she is doing better. She's had other hospitalizations, but because of her dad and his current place in the spotlight, this one is suddenly being reported all over the media. And because of this more people are wondering, "what is Trisomy 18?"

I wondered that myself after my first ultrasound with Lilly, when the doctor started pointing out potential problems with her. I had never heard of Trisomy 18. I couldn't even remember the phrase when we first left the hospital. I kept thinking "that "T" word ... with the number ... what was that again?"

So a lot of people are doing online searches to find answers. (I've gone from averaging 300 hits on the blog a day to 3000 a day!) It can be hard to find anything positive about Trisomy 18 though. I am thankful that I blogged about Lilly's life and that some other parents of Trisomy 18 children have done or are doing the same. We need good information out there.

We need people to realize that children, who have Trisomy 18, can have good, happy lives. That Trisomy 18 is not the child themself - it is not a sickness - it means they have three of every chromosome number 18. (An extra copy of the chromosome affects development.) Our Lilly, who had full Trisomy 18, lived 17 wonderful months. No doctor can accurately predict exactly how long a child with Trisomy 18 will live so it is wrong to not give these children a chance. There are children, currently living, that are in their teens - and older! - with Trisomy 18. A lot of online sources seem to say that these children die horrible, painful deaths. I say not so. Lilly died a very gentle death, in her sleep, after a wonderful routine day.

Anyone that has been blessed to have one of these children will tell you, that no matter how short or long their child lived, that child was amazing. I know that Lilly had a bigger effect on more people in her 17 months than many people do in a normal lifetime. We have been so amazed to have people still coming up to us and telling us how Lilly touched their life, how she grew their faith, changed their thinking about this or that, etc.

But no matter how many good things we parents of children with Trisomy 18 share with others, there will always be many out there that just don't care. They think these kids are a drain on society. A waste of time, air, and resources. It's hard not to get angry reading some of the comments that people are leaving on online news articles about Bella Santorum. Nasty, negative, hateful things.

One ignorant comment that made me just shake my head was a person that wrote that Bella would probably never learn the difference between a person and a door and certainly never understand who her father is. Have you ever looked at pictures of Bella with her family? It's obvious she knows her family and is delighted with them! To the left is a picture of Bella with her father, Rick. Look at their smiles! Beautiful! She is a happy, secure, and loved little girl.

I know because I saw that in our Lilly. She was more joyful than anyone I ever knew. And many other parents of children with Trisomy 18 say the same thing about their children.

My husband was asked to preach the sermon at church last November. He spoke on this verse from Isaiah 42:3: "A bruised reed he will not break, and a smoldering wick he will not snuff out." This verse lends itself to children with Trisomy 18 - and anyone else that society deems as a waste of resources. (It wasn't just a Nazi belief!) If you do want to go strictly by logic then yes, Lilly was a waste of money and time. Along with many many other people with all sorts of diseases, people that are elderly, hurt in accidents, or anyone that doesn't make a big enough contribution to society. And really - we are ALL damaged in some way. (I go more into this type of "logic" in a blog post from last year where I responded to a negative comment in which the person accused us of "condemning Lilly to life." You can read that here.)

But are we strictly a people that runs only by logic? No. God created us to love. And He created us to love because He IS love. "Whoever does not love does not know God, because God is love." - 1 John 4:8

It's wonderful watching God using Bella to His glory, as He did - and is still doing! - with Lilly!

I just wanted to end with some pictures of our family with Lilly - where you can see that she LOVES us and is aware of who we are!

The camellia bush

This picture of Lilly is from March of last year. I am holding her in front of our camellia bush. I love this bush - it begins blooming towards the end of January and is in full bloom in February and lasts into March. I love cutting flowers from it to put in the bud vases that line my window sill in the kitchen. (I posted pictures of Lilly in front of the bush last year in this post.)

I was able to cut a half dozen flowers a few days ago. As always, they are beautiful and cheery. This year I just keep thinking of Lilly whenever I see the bush and about the pictures I took of her in front of it. I'm so glad she was with us for 529 days! We got to experience so much together and create so many memories.

Today I made sympathy cards for two families that are members of Samaritan Ministries (our health insurance alternative group). Both families lost babies. (A set of stillborn twin boys for one family, and a baby girl that only lived a few moments for another family.) I made our sympathy cards we use - they have paintings of Jesus with children that I found and copied from online, and I added this Bible verse to them:

"Jesus said, 'Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.'” - Matthew 19:14

I love thinking about the kingdom of heaven belonging to Lilly and children like her. But this verse can also apply to us. I recently came across this quote by Charles Wesley:

"Gentle Jesus, meek and mild,
Look upon a little child,
Pity my simplicity,
Suffer me to come to Thee."

I like that.

I had a new comment today, in response to an old post. It was from a woman named Barbara. She wrote: "i completely understand what you are going through. on jan. 9, 2012 i gave birth to a beautiful little girl summer hope at 21 weeks i found out she had t-18 and hlhs the drs. wanted me to terminate but i didnt i carried her 9 months and had 9 wonderful hrs with her after birth she weighed 4lbs 2 oz and was 17 1/2 inches long. IN the 9hrs.summer gave us we learned alot about our little angel she was left handed like her daddy,had her brothers eyes nose and feet and my ears and lots of my black hair. MAY Lilly and SUMMER forever be in our hearts and prayers." HEAVENS LITTLE ANGELS"

Thank you so much Barbara for sharing that. May the Lord bless and comfort your family as you remember and cherish the time you had with Summer Hope!

A family of our Trisomy community on Facebook sadly lost their little Grayson yesterday. He had been born Friday and had Trisomy 13. I'm so glad the family got to spend some time with him and get pictures. Having pictures is such a huge blessing.

Bella Sanatorum, the three year old daughter of former senator Rick Santorum has been hospitalized for pneumonia. Bella has Trisomy 18. Thankfully I read this evening she is doing better. It seems that pneumonia is just running rampant right now. I've known a number of "normal" kids and adults that have gotten it this winter. Just a cold can be so dangerous to a Trisomy 18 child, so that is really exciting when one pulls through pneumonia.

Finally, I'm getting a lot of people asking how I'm feeling. I'm about 7 weeks pregnant. I have some weird symptoms: hot flashes, I gag when I brush my teeth, the inside of my nose feels swollen, and I feel like I need a nap in the afternoon. So really - I'm doing well. And honestly, I am still surprised at God's grace in all this.

And I just keep wondering - what will happen next?!

The Kwant Clan Crafts

photo: Cassie and Hannah

The Kwant family is a Christian homeschooling family of 10 that lives in Washington state. Their little Hannah, Trisomy 18, lived 64 wonderful days with them, before Jesus called her home.

Hannah's big sister Cassie is a talented seamstress and is now selling some of her creations in memory of her little sister Hannah. She has blankets, bags, pillow cases, and headbands so far. You can see the items at her blog: http://kwantclancrafts.blogspot.com/

Items are actually purchased at Cassie's Etsy shop: http://www.etsy.com/shop/kwantclancrafts?ref=seller_info

I know Cassie does good work - she made Lilly a special blanket. It was actually the blanket that I quickly grabbed to wrap Lilly in when I found her dead. I now keep the blanket in Lilly's little bed, which is still in our bedroom. I have pictures of Lilly on the blanket on this blog. The Kwant family also has a picture of her on their blog: http://kwantfamilycorner.blogspot.com/2012/01/very-neat-post-on-special-need-children.html

I just thinking this is such a wonderful thing for Cassie to be doing. It's a good use of her skills, it honors her sister, and honestly - doing creative things really brings comfort. Just my observation in being involved within the Trisomy 18 world, it appears to me that the families that actively do things to remember their departed child, and have a relationship with the Lord, cope much much better than those that don't do anything at all.

Hannah's mama Sandi recently had a story about Hannah's life published in the Above Rubies magazine. You can read the story here: http://kwantfamilycorner.blogspot.com/2012/01/above-rubies-text.html

This family continues to amaze and inspire me with all the memory projects they come up with to honor Hannah. My daughter T. and I both find it very theraputic to make things to remember Lilly, so we are getting good ideas from this family. Here are two posts highlighting some of the many things they have made:
http://kwantfamilycorner.blogspot.com/2012/01/special-ways-we-are-remembering-hannah.html
and
http://kwantfamilycorner.blogspot.com/2012/01/more-remembering-hannsah.html

Those posts had so many ideas that I actually printed them out. There are things that would be good to make to remember anyone that passed away that you want to honor, not just little children.

Sandi posted some pictures of some of Hannah's angel Trisomy friends recently: http://kwantfamilycorner.blogspot.com/2012/01/hannahs-angel-friends.html It warmed my heart to see Lilly in the line up. My son was looking at the pictures with me and shouted "Lilly" when he saw her. I told him that all these children had Trisomy 18 and were in heaven with Lilly. He thought that was wonderful and started talking about how much fun they were all having playing with Jesus. Amen!

This scripture is perhaps a foreshadowing of heaven in this picture of Jerusalem (or of heaven right now!): "The city streets will be filled with boys and girls playing there.” - Zechariah 8:5

Funeral flowers and a gift from Lilly

When Lilly died we received about a dozen beautiful bouquets of flowers. (Not counting several plants.) I kept them all around us in the house until they began dying and shedding everywhere. So we put them on the front porch. Even though the flowers were all dead, I loved them as they were given in honor of Lilly.

Finally even I had to agree with the rest of my family that it was time for them to be cleaned off the porch. They were just making too big a mess. So earlier this week I took a trash bag out and began emptying the vases. One of my close friends, C. and her twin girls, were visiting and it helped me emotionally having them outside with us while I worked. I pulled out some of the dried dead flowers to save as they still looked so beautiful. And we now have them in the kitchen.

I was excited to receive a package in the mail that same day. It was an angel ornament that was personalized with "Lilly." The card with it gave me happy tears. It said "I love my mommy, and I want her to know I have my wings." (Thank you to my thoughtful husband for helping Lilly with the order!)

Yesterday I heard that my nephew J.L. got really upset and angry when he saw an ambulance, because he thought an ambulance had taken Lilly away to heaven and he wanted her back with us.

As I thought about his reaction, I remembered that anger is supposed to be a normal part of the process of grieving. I also thought about how I've talked about this with my husband and daughter T. None of us feel any anger at Lilly's passing away. I think it is because:

1) we believe God's timing in all things is perfect
2) we have so much gratitude that Lilly lived 529 days - so so much longer than most children with Trisomy 18

It is a relief to be spared the emotion of anger in this. There's enough to deal with.

Big Sister Lilly??!!

This picture is from June 2010 when I was pregnant with Lilly.

It seems like we never know what's going to happen next lately. But God has blessed us. Our angel girl Lilly is going to be a big sister! What?? That's what I said. (Especially since I've never been able to get pregnant easily and I wasn't thinking about it now.) Here we all have been missing Lilly so very terribly. Well maybe she put in a word with God and asked Him to create a baby for us to hold.

And Lord willing that is what we will be doing in September. (Due date is September 14.)

To answer a question I know many of you will have - is there a chance the next baby will have Trisomy 18? It would be very very rare for that to happen. Honestly though, I wouldn't mind a special needs baby. But I trust that however God has knit this baby together - boy or girl - it will be perfect for us. Just like Lilly was. And like T. and H. are.

T. voiced her concern today that she was afraid to love the new baby too much - that she might be disloyal to Lilly. I told her that it was normal to feel that way. It's crossed my own mind too. But that we would keep doing things to remember and honor Lilly - all the days of our lives - and that we would always have a special love and place for her in our hearts. Always.

This morning H. was pretending to have made a batch of cookies. He said he was going to take them to heaven when he died to share with Lilly. I told him that Lilly didn't need her g-tube in heaven - she could eat by mouth. He exclaimed "What?? Really??" in complete delight.

"Through the praise of children and infants you have established a stronghold against your enemies, to silence the foe and the avenger." - Psalm 8:2

Remembering my Lilly Sunshine

This picture (Nov. 2011) is blurry but it makes me smile. This is from my view in our SUV when I would lean over the back of my (passenger) seat to check on Lilly. She would always look up at me and just grin. She thought it was really funny for us to look at each other upside down.

Yesterday morning my son came and got in my lap. He had the two stuffed animals of Lilly's that he inherited. He was petting them and saying "Awwww ... Lilly's friends ... I'm taking good care of them." He gave me a big hug and wanted me to sing him a Lilly song.

You are my sunshine,
My Lilly sunshine,
You make me happy - when skies are grey,
You'll never know dear - how much I love you,
Please don't take my Lilly away.

It didn't seem right singing this song to him. I kept thinking Lilly had been taken away. I think we need to make up some new songs.

At church yesterday, our service began with this song (the psalm we sing is based on Psalm 40):

I waited for the Lord;
He stooped and heard my cry.
He brought me from the pit, out of the dungeon mire,
my feet set on a rock, my footsteps made secure.
My lips He gave a song, a song to praise our God.

It seemed so fitting with what I had been thinking earlier that morning. I am thankful that people at church aren't afraid to mention Lilly to me. Several did yesterday and it greatly cheered me up.

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.