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!