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.

Lilly links on other blogs

Here it is a Thursday again - will Thursdays always seem like an anniversary of the day Lilly died? However this week, I am quite excited about a new idea I have to honor Lilly and help other Trisomy 18 families. I'm convinced that God gave me the idea in a dream. I'm not ready to share it on the blog yet though - but hopefully it will be completed in the next few months and then I'll tell anyone about it that will listen. It is amazing what having hope and a plan can do for the soul!

Earlier this week, my husband brought home from work a handmade gift from the author of this blog. It is a little bowl made out of material. Not only does it look cute and handy, but it's made with "Lilly colors!" Love the red, white, and blue. I loved how even the packing stuff was red, white, and blue. How kind and thoughtful!

Thank you to everyone that has contributed angel ornaments - I'll post an updated picture of the tree soon. It's beautiful!

I wanted to share a couple links about Lilly that other people have posted on their blogs. I really appreciate it! I love to talk about Lilly, read about Lilly, and see Lilly pictures! I don't want her forgotten.

This link was from earlier this week and it shared the author's story of finding out about Lilly passing away last month (we love how she called Lilly a "tiny hero":
http://myawesomeoliveshoots.blogspot.com/2012/01/little-life-remembered.html

These are links to blog posts written right after Lilly died:

From the blog of Alegria, a little girl that lived for two years with Trisomy 13:
http://alegriaelizabeth.blogspot.com/2011/12/please-pray-for-lillys-family.html

From the blog of Faith, a little girl that is now 3 and has Trisomy 18:
http://littlefaithtobigfaith.blogspot.com/2011/12/tears-with-our-friends.html

From the blog of Aaron, a little 19 month old boy with Trisomy 18:
http://compatiblewithjoy-trisomy18.blogspot.com/2011/12/41-angels.html

From the blog of Lily, a 3 year old girl with Trisomy 18 (she and her family came from out-of-state for Lilly's viewing):
http://iseeloveblog.blogspot.com/2012/01/december.html

From my friend C (she and her husband drove 10 hours to come to Lilly's viewing and funeral):
http://inspiration4theday.blogspot.com/2011/12/looking-to-new-year.html

From Giuliana's blog, she is 17 months, Lilly's name isn't mentioned but Lilly and another Trisomy 18 girl named Julia (who passed away the day after Lilly) are who are mentioned:
http://www.g-giftoflife.blogspot.com/2011/12/december-20-2011-holiday-bustle.html

From the blog of my husband's niece:
http://musingsofmalonemom.blogspot.com/2011/12/lilly.html

We remain grateful for everyone's prayers, love, and support. I am woefully behind in thank you/acknowledgement notes, but please know that I am slowly getting them done. It is a joy to thank the many people that have reached out to us.

Something I would like to encourage people in - something that I have learned first hand on our Lilly journey - is that when you know someone that has lost a close loved one - send a sympathy card, call them, e-mail them, say something to them in person, send flowers - just do something to let them know you care and are praying for them. You don't have to say anything grand - just "I'm sorry and I'm praying." Don't be afraid to share with them stories that you remember about the person that died. Don't be afraid to mention that person's name to them! It is hurtful when someone will not even acknowledge a loss. I think people do it because they feel awkward, or are afraid that they might upset the person that is hurting. But you won't hurt them in a bad way.

Anyway, I wanted to mention that because I have had a couple people ask me my opinion about this. I have to say it is so encouraging to have heard from so many people, including some we don't really even know and it's a bit disappointing to not hear anything from people that you have expected to. I'm not trying to point fingers at anyone. I just want to share something important I've learned on the journey of grief in hopes that it helps others.

As the Bible says in Romans 12:15: "Rejoice with those who rejoice; mourn with those who mourn."

Thank God for photographs!

I am so very thankful to God that I live in the time of digital cameras! I really needed a Lilly smile today. And all I had to do was make a few clicks on my computer.

T. took these pictures of Lilly last October.

"Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken nor my covenant of peace be removed,” says the LORD, who has compassion on you." - Isaiah 54:10

Flowers for Lilly's grave

Today marks exactly one month since Jesus called Lilly home. Oh how we miss her! We are so blessed to be surrounded by pictures of her. Though I admit, sometimes it crosses my mind, that if we pack all Lilly things away, then maybe we won't miss her so much. But of course that wouldn't really be true.

Yesterday we visited Lilly's grave and took some beautiful artificial flowers to leave there, along with a little cherub statute I had bought at Joann Fabrics. I wrote a little message to Lilly on the cherub's wings and we all signed it.

Last Tuesday, the kids and I went to our local florist, Flowers on Main Street, and put in an order for something with red, white, and blue flowers to honor our Little Firecracker. Donna, the shop's owner, came out from the back to see us and recognized my daughter T. (T. and my mom had gone there to order Lilly's casket spray.) She gave T. a hug and asked how we were doing. Then she kindly told T. to pick a flower out to take home for free. T. choose a starfighter lily. I gave Donna a picture of Lilly's casket with the flowers on it and one of Lilly's "business cards" I made, and a thank you note for the beautiful spray.

When we went back Friday to pick up the flowers, I was so very pleased. They were beautiful and the arrangement even better than what I had imagined. Then I was stunned when Donna told me that there would be no charge for the flowers! How kind is that?! The "Lilly blessings" never cease! I just can't express how touched I was. (I had been ready to pay $55-$65 for the flowers.) If you live in our area, then I definitely recommend Flowers on Main Street! (In the old Varina section of Fuquay-Varina.) Such a compassionate store owner, beautiful flowers, and a really really neat shop!

One of the Trisomy 18 mamas I am in touch with is the mama of sweet little Hannah Grace. Hannah Grace lived about 2 months and sadly passed away last winter. (I say "sad" - sad for her family, but so wonderful for Hannah to be in heaven now!) Her mama's latest blogpost shows a number of things that the family made to remember Hannah. I think the shadow boxes especially are fantastic! Check them out on Hannah's blog here. My daughter T. and I both feel that doing projects like this to preserve memories is very very therapeutic.

Finally, if you would please pray for Lilly's little friend Faith. Faith is in the hospital, with the nasty RSV virus and also has the H flu. She had to be put on the ventilator. Faith and her family had just recently got back from a trip to Florida through Rainbow Connection (like Make A Wish Foundation). I guess Faith had thought that a trip to the hospital would be more exciting than going home! These kids definitely keep ya on your toes!

Today my family finished reading Lost in Death Valley: The True Story of Four Families in California's Gold Rush by Connie Goldsmith. It was a fascinating account and full of diary excerpts from some of the survivors. One of the women that survived, had been pregnant during the agonizing struggle to get out of Death Valley. When she finally gave birth, her baby girl lived only 19 days. This poem is carved onto the baby's headstone:

A little time on earth she spent

'Till God for her his angel sent

And then on time she closed her eyes

To wake in glory in the skies.

Amen. This beautiful poem is perfect for some many of the sweet little children with Trisomy 18.

We love you our Lilly angel!

It's been 4 weeks ... how are we doing?

I'd say one of the biggest questions people have for us right now, though some are hesitant to ask, is "how are you doing?" Since so many have asked, I'm sure that there are many out there that are curious but dodn't want to ask. So here's our answer.

We're doing "O.K." In some ways better than we thought we would. But we all miss Lilly so incredibly much. My husband, daughter T., and I all find ourselves just crying "for no reason" sometimes. I'd say usually there's a "Lilly trigger" but not always.

My husband has propped up on his dresser the Lilly posters I made for his door at work when she was born, a Father's Day card I made him from Lilly, and her funeral program.

T. has the peace lily plant that my kids pediatrician sent the day after Lilly died, a starfighter lily that our local florist gave her for free earlier this week, and a few of Lilly's things. (A doll, pair of slippers, blanket, small caterpiller toy.)

I feel like part of me died with Lilly. I can laugh and smile, but honestly the world seems so much less interesting now. Most things just seem so flat. And the days long.

Our son H. has always been a child that models his play after real life things. Lilly's funeral was the third he attended in 6 months. (First my husband's father died, and then his uncle.) So death and funerals are completely normal to him and they have become part of his play. Almost every day now one of his stuffed animals "dies." He turns his stepstool upside down and puts the animal in it for a coffin. He puts a lid on top to close it. And then he often covers it all with a cloth. But usually, a few hours later, whichever stuffed animal died, will "come back to life like Jesus did." Occasionally he asks if Lilly can do that. He tells me things he misses about Lilly.

"Every experience God gives us, every person He puts in our lives, is the preparation for the future that only He can see.'" - Corrie ten Boom (a Christian WWII Holocaust survivor)

Oh - there is one more question that a few brave people have admitted to wondering. Would we like to have another child? ABSOLUTELY!!

Lilly's blenderized diet - where we ended up

In hopes that this post will help someone out there, I wanted to do a final post about Lilly's blenderized real food diet.

On Sunday I gave one of my favorite Lilly resources to a friend at church that has an adopted son with special needs. He got a g-tube shortly before Lilly did and his mama has been looking into the real food diet. The resource is the book Homemade Blended Formula Handbook. (Available from www.mealtimenotions.com Click the book title and it will take you directly to the webpage that describes the book, and where you can order it.)


First, I would recommend the "real foods blenderized diet" to anyone that has a g-tube fed child. Second, if you decide to pursue this - get ready for a lot of questions from dieticians and medical doctors. Going this route is just not the norm! Formula - no matter the age - is. Third, if you do convince people that your child is thriving on a blenderized diet, they may say "but you can't because it will clog the g-tube button!" Lilly's clogged maybe three times. That was because I hadn't pureed the food long enough. (You need a Vita-Mix and you need to just let it go on high speed for awhile.) I was able to easily get the clog out with tweezers or a syringe of water. Also note that Lilly's MIC-KEY button was one of the smallest - if not the smallest - there is.


Lilly had been on breastmilk since day one. We tried adding in formula for a few months to add calories but finally quit because it just messed up her digestive system and gave her stomach aches and gas. But, like all children, she finally got to a point where she needed more than just breastmilk.


I have earlier posts on how I introduced her to this diet. So I won't go over all that again. I just want to stress that on this diet, she thrived. Her weight gain, which had stopped, slowly began going up again. She seemed to have more energy. Her digestive system worked well and she rarely had gas issues. She was content. She was doing more physically.


I recorded everything in little notebooks everytime I fed her. It's neat now reading back over what she had in a day. I wrote everything down for two reasons. First was for me, so that I could keep track of what I was feeding in a day, or couple of days, to be sure there was variety. Second, I wanted to be able to show the doctors and dieticians that I took this very seriously and put a lot of thought into it.



For a typical day, Lilly was on continuous feed, via a feeding pump, overnight. During the day, every 1 to 1.5 hrs. or so (except nap time), she would get one ounce of one of the below foods, or two mixed (organic whenever possible, veggies were steamed) :

- coconut oil (good fat - she loved to eat this one by mouth)
- avocado
- chicken broth (homemade with organic chicken bones and parts like chicken feet)
- yogurt (homemade)
- spinach with orange juice (needed to be combined for better absorption of the iron)
- dark chocolate (XOCAI) (super high in antioxidants and many other things - see this article) (I usually combined this with avocado)
- banana
- cauliflower
- congee (slow cooked brown rice with salt, ginger, cinnamon)
- eggs
- apple
- rice cereal with apple
- squash
- carrots
- peas
- sweet potato
- clementine
- green beans
- blueberries
- broccoli
- kefir


I also gave Lilly an ounce of water frequently. Water is good to give about 30 minutes before a meal, as it should be digested by the time you feed them the food. I usually mixed VitAloe and Stemkine and spirulina in with her water. I called it her Super Water! VitAloe was for immune boosting, StemKine was for regenerating damaged tissues (it supports bone marrow to produce more stem cells), and spirulina powder (immune boosting, phytonutrients, source of protein).

In addition to the three above supplements, I also gave her (every day):


- blackstrap molasses (for iron - Lilly was anemic at times, so this was important)
- probiotic (for digestion) (Country Life's Maxi Baby dophilus)
- kelp powder (iodine)
- beet powder (high in iron, potassium, magnesium plus many other benefits)
- mullein infusions (high in iron, great for respiratory issues, pulmonary diseases)
- Brewers Yeast (vitamins, minerals, proteins, immune boosting - good list here)
- Omega-3 DHA liquid (Dr. Sears brand) (brain power!)

I think that is it! The only other thing, was Herbs for Kids Echinacea/Astragalus, when needed. That is a great immune booster. I use that for all my kids if it sounds like they're starting to come down with something, or I know they've been exposed to something.

The day Lilly passed away I had pureed chick peas that morning for her to try. It was in the freezer in ice cube trays until recently. I'm still disappointed I didn't get to try that with her. Even though all this was more work that popping a can open, I really really enjoyed it.

I saw in my notebook that Lilly's very last meal was spinach/orange juice. I wish it had been chocolate and coconut oil!

A quick update on my friend K. - the doctors finally determined she had a congenital heart defect. She is to have surgery this afternoon to put in a pacemaker and defibrillator. If all goes well she will go home soon! Amazing! It looked like she wasn't even going to live for awhile. God really cares about us and answers prayer!

"If anyone acknowledges that Jesus is the Son of God, God lives in them and they in God. And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in them." - 1 John 4:15-16

Packing away Lilly's sweet clothing

The Sunday before Lilly went to heaven, we were surprised by a visit from our local chicken farmer. His wife was with him and she had made Lilly an adorable fleece blanket. We were so touched by her kindness! Sadly I never got a picture of Lilly wrapped in the blanket, but I took a picture of T. and H. wrapped together in it in front of Lilly's memorial tree. There is something irresistible about the softness of this blanket and we all enjoy using it, thinking of Lilly when we wrap up.

By the way, if you live in our area and want some delicious organic chicken eggs and/or organic chicken, contact the Triple T Ranch and tell them Lilly's mama referred you! We easily eat 4 or 5 dozen eggs a month and we buy one whole chicken a month. I really enjoy using the bones to make chicken broth. (I gave the broth to Lilly a lot, both plain and mixed in with her purees.) I even learned to use chicken feet to make the broth more nutritious.

Today I finally made myself pack away most of Lilly's clothes. Most of her regular clothes were in a changing table that was in our office/schoolroom. We decided to put the table in the attic. So that meant the clothing needed to come out. I packed all those wonderful little outfits Lilly wore into a big tote bin with a lid. She also had some clothes in the dresser she shared with my son so I packed up those too. However I left all the beautiful dresses she wore on Sundays in the closet. All of them - from preemie size up to 9 months are going to stay sweetly hanging there until I get a nice rack to hang them up on my wall on.

It was so sweet holding and folding Lilly's clothes. So many good memories with most of the outfits. It made me long for another little girl so I could dress her in Lilly's clothes. Amazingly I only cried once and by the end I was even smiling. However at dinner tonight, we had on a CD that we got from Faith's family (another homeschooling Christian family with a daughter with Trisomy 18) and Bart Millard's rendition of "My Jesus I Love Thee" came on and before I knew it I was crying. (It was one of the songs we sung at Lilly's funeral.)

From what I hear though, people that mourn will just start crying at unexpected times. Hmmm. I'm not sure what to think of that.

Thank you to everyone that has been praying for my friend K.M. The Lord has been listening! Her heart function is amazingly almost back to normal! All on it's own! She is still in the hospital and it seems much of the trouble she is having now is from medications. The doctors still don't know what caused her terrible heart problem but I don't think they're talking about a transplant anymore. Please pray they figure it out. And for encouragement for K. and her family. Especially in the wee hours of the night. K. is struggling then. I remember nights were often so hard for Lilly in the hospital too.

Matthew Henry, a theologian living in the later 1600s and early 1700s, wrote, "God has a bottle and a book for his people's tears, both those for their sins and those for their afflictions. He observes them with compassion and tender concern; he is afflicted in their afflictions, and knows their souls in adversity. Paul was mindful of Timothy's tears (2 Timothy 1:4), and God will not forget the sorrows of his people. God will comfort his people according to the time wherein he has afflicted them, and give to those to reap in joy who sowed in tears. What was sown a tear will come up a pearl."

It's been 3 weeks today

Thank you to whoever the anonymous person is that left the little angel ornament on my husband's desk at work. It's so cute and looks great on Lilly's memory tree! :)

It was 3 weeks ago today that Lilly went to be with Jesus. It feels like forever ago. At times I find myself still feeling puzzled over what exactly happened. We knew Lilly was sick but we really thought she was getting better. She was on an antibiotic. Her pulse ox numbers were good, although I admit I didn't check her the last day or two because they had been good and her breathing sounded normal. She was eating and sleeping well. She was cheerful and energetic. On the day she died her nose had cleared up. She did have a new cough I didn't like but she only coughed a couple times the whole day! And she had recently had her heart fixed. Considering she had almost died 5 times before, and had pulled through, we just weren't expecting it this time. And so I think "just what happened?!" I am curious from a medical standpoint.

Yet at the same time it just doesn't really matter. I am just glad for Lilly, and for us, that when God decided it was her time He took her so incredibly gently.

"Because of the LORD’s great love we are not consumed, for his compassions never fail." - Lamentations 3:22

Eating with the Lilly Collage

Today Lilly would have been 1 1/2 years old. This morning I asked Jesus to tell her "happy birthday" for me and that "mamma loves her Lilly!"

Happy 17 mos. to Giuliana! Thank you J. for emailing me this morning, remembering Lilly's birthday!

In the past, whenever we ate a meal, if Lilly was awake we put her in her bouncy seat on the table. (It was where the advent wreath is in the picture.) She enjoyed being part of the meal and would play with her toys hanging across the bouncy and we would all cheer for her whenever she pulled on the frog to make music.

Right after Lilly died, the bouncy seat quickly came down, much to our son's disappointment. It was more for practical reasons though - so many people were coming through the house and we needed the room at the table to feed people. However we all missed Lilly with us at the table. So my husband hung the picture collage we made of Lilly for her viewing and funeral on the wall by the table. We enjoy looking at this while we eat now. My only regret about the photo collage is that there are not any pictures of Lilly in her last two months of life. I simply haven't gotten the pictures developed yet.

There are a number of larger pictures in the collage that are all from a photo session we did with Lilly for her 1st birthday. I started worrying the other day about several, and that if they faded from the sun then I wouldn't have them anymore. So I contacted our photographer to see about buying the images of them on CD from him. He kindly emailed them to me for free! This photographer came to our house on three separate occasions to photograph the family and Lilly. He is a volunteer photograph for Now I Lay Me Down To Sleep, and has his own side business. If you live in our area, I definitely recommend him! http://www.steverubinphotography.com/

I'm so grateful that I live in the age of digital cameras! I must have a couple thousand of pictures of Lilly and that makes me so happy.

"Be strong and courageous. . . . [T]he LORD your God goes with you; he will never leave you nor forsake you.” - Deuteronomy 31:6

Full but empty

This is our second day of being back to "normal." My husband is back at his job. We're homeschooling again, preschool and 5th grade. Doing chores. Taking walks. Even reading (something I didn't do much of while Lilly was alive, except during hospital stays).

I've never been one to get bored. In addition to schooling and chores, I am a "project queen." I have enough projects that I'm either working on - or have in my mind or on lists -that could keep me busy for many many years. So our days remain full.

But there are gaps. BIG GAPS. The Lilly gaps. She's not here filling up our days and nights anymore to overflowing. It just feels so empty.

Our days are like her bed. (Today's picture) Full yet empty.

Lilly's bed has lots of things in it: the sock monkey pajamas she was wearing when she died, the heart flannel blanket I wrapped her in when I found her dead, her wool diaper cover which I can't bring myself to wash, her blankets I covered her with the nights before she died, her Lilly-Firecracker-Quilt, her small yellow pillow that she liked her top leg on (she slept on her side), her blue hand splints, her bigger pink pillow that she laid on on our bed each night to watch the ceiling fan and play, and her "Lilly colored" stuffed sock monkey. Lots of things. But no Lilly.

At least not now. But one day we'll be with her again!

"But in keeping with his promise we are looking forward to a new heaven and a new earth, the home of righteousness." - 2 Peter 3:13

Decorating Lilly's Memorial Tree

Happy new year! I look forward to this year though things feel pretty empty right now.

Today we decorated Lilly's artificial tree, which we had bought for her Christmas present since she loved our big Christmas tree so much. We had decided to go ahead and set the tree up anyway, making it a Lilly memorial tree. We thought we would do a different theme on the tree each month.

Every January will be an angel theme. I gathered up Lilly's angel ornaments that I had given her plus several angel ornaments I had.


Then I added two angel ornaments that we got for Christmas this year. We have been so excited that several people have contributed angel ornaments to Lilly's tree. We have ornaments up from six people and three more are sending angels! Thank you so much to everyone that has contributed - it really touched our hearts.

Now I'm considering several ideas I have to make a tree skirt.

Thank you everyone that has asked me about, and or prayed for, my friend K.M. that I mentioned in my last blog post. Doctors were saying for awhile that K. was going to need a heart transplant in order to survive. Now I am not sure if that is still thought necessary. (I'm getting info. from several sources so I'm trying to piece it all together.) Last I heard is that K. was off the ventilator and responsive. They are thinking the cause of all this is a really bad virus. Whatever the case though, K. is still in danger and needs frequent prayers.


I was saddened to get news from another friend that her son passed away a few days ago. M.B. was pregnant with a boy with Trisomy 18 that was actually due today. He went to heaven, a few hours before she gave birth. His funeral was yesterday. M. said she was pleased with the service and her son looked very "peaceful." I am imagining Lilly in heaven with him playing with him and telling him all about the beautiful jewelry that his mom made her, including the bracelet and necklace that she was buried in. You can find this sweet woman's jewelry for sale on Etsy at: http://www.etsy.com/people/SixSistersBeadworks

Tomorrow is back to routine for us for the first time since Lilly passed away. We're not looking forward to it, and yet we are. I have been dreading my husband leaving to go back to work. But today I have felt at peace about it. And our loving son has told me he will be my Lilly when I want him to be. :) I thank God for my family. And for all of you who so faithfully continue to lift us up in prayer.


"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." - Matthew 6:34