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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

Saturday, March 31, 2012

A beautiful Easter lily

Late this afternoon the doorbell rang. When I opened the door, my friend C.S. was standing there with this beautiful Easter lily plant. She handed it to me and said that she and her family wanted us to know that they were thinking of us and Lilly.

Wow. I was so touched and uplifted by her words and the gift. It really gave such a happy burst to my day.

Thank God for friends!

"Two are better than one, because they have a good return for their labor: If either of them falls down, one can help the other up." - Ecclesiastes 4:9-10

Not only do I love the plant, but that is great purple polka dotted paper! :)

Thursday, March 29, 2012

A Change in Perspective

The other night, I saw this picture on a post by Caleb's mom. The words struck me:

The sky never looked so beautiful until Heaven took you.

Ever since Lilly died I've felt like the sky has dimmed. The sun was no longer as bright. Even though I see all the beauty of spring outside, it's not the same.

However, yesterday I kept thinking of the words on this picture. I used it to begin to transform my thinking. Now my eyes are so often drawn to the sky and I think "How beautiful! My Lilly is up there smiling!" Thank you God!

In thinking about how just a few words could help me change how I felt, I was reminded of the part of 2 Corinthians 10:5 where we are urged to "take captive every thought to make it obedient to Christ." There is freedom and power in being able to do that. Not that it's always easy!

Today I skimmed a short e-book that I saw linked in a post in a Trisomy Angels group. It is written by a mom of a baby named Cora that lived for five days. (She had a heart defect and her death was a surprise.) The e-book is called "When A Friend's Baby Dies." (Click the title for a direct link. Here is the homepage of the website: ) I thought the author had a lot of very useful things to say and that the e-book is a very good resource. It is FREE. So download it and save it for when you might need it!

I've mentioned several times before, that this grieving process over Lilly has been teaching me a lot about how to better support others going through this. I still have a lot to learn though, so I appreciate ideas from others.

Tuesday, March 27, 2012

Lilly Lilly on the wall ... sweetest girl of them all!

Our latest Lilly memory project: enlarging and framing some of our favorite pictures of Lilly. The group of pictures in photo 1 is in our office/schoolroom over our computer desk. The pictures in photo 2 are in T.'s bedroom.

All of these pictures of Lilly were taken shortly after her milestone 1st birthday by our photographer from Now I Lay Me Down To Sleep.

Photo 3 shows two jumper's hanging in T's room. The larger one, in fireworks fabric, she made herself last July. I made the small one, with firecracker fabric, for Lilly last July. Unfortunately it didn't fit her well! It wasn't wide enough in the leg area. But I got some pictures, we have a memory, and T has something cute for her wall to remember our Little Firecracker by.

Memories are indeed such a blessing! Along with photos!

We're going to be going to another funeral on Saturday. (This makes 5 in 8 months.) My son said excitedly today that Lilly sure does know a lot of people in heaven! He is right.

Thank God for the hope of us all being reunited in heaven one day.

Saturday, March 24, 2012

Planting our Lilly Memorial Garden

After Lilly died in December, I decided I wanted to have a garden with lily flowers in her memory. So I bought my daughter T. and I both used copies of a book on lily flowers. Wow - there is a huge variety!

We found a couple packs of lily bulbs at the store recently and bought them. We got star gazer lilies, oriental lilies, and a pack of assorted Asiatic lilies.

There are so many varieties of lilies we've seen in plant catalogs that we'd like to try planting, but it's probably best to start small and add to the garden each year.

Yesterday my husband tilled a patch of our yard for the garden, right next to our butterfly garden. Today I hoed the dirt and T. helped plant the lily bulbs. Then my husband put down a light covering of mulch, and put a little fence around it.

We put a memory stone at the front of the garden. I will be on the lookout for some angel and cherub statues to nestle in once the flowers start to grow. I really hope that the flowers do well! We don't know a lot about growing flowers so everything we do is a bit of an experiment.

Today's last picture shows an Easter lily that is growing. For the last two Easter's we've gotten an Easter lily plant. After enjoying it inside for awhile, we plant it outside. I'm so excited to see the two we've planted coming back up this year! The one in the picture is the one we got last year when we had Lilly with us. It makes me smile and I think of her wearing her bunny ear hat.

"My beloved is gone down into his garden, to the beds of spices, to feed in the gardens, and to gather lilies. I am my beloved's, and my beloved is mine: he feedeth among the lilies." - Song of Solomon 6:2-3

Wednesday, March 21, 2012

"Rainbow babies"

I saw this dress at Kohls a few days ago and it reminded me of our Lilly - our Independence Day girl! (Not sure why the picture turned out so small - I took it on my cell phone at the store.) I had the idea of hanging up a bunch of Lilly's red, white, and blue clothes across the fireplace mantel (on the Christmas stockings nails) in July for the memories and decor. :)

I learned a new term last week - "rainbow baby." It seems that is a term for a baby born after a sibling that has died. So the baby I am pregnant with is referred to as a "rainbow baby." I had also heard the term "therapy baby" but I think I prefer "rainbow baby." It's so colorful and cheerful!

In our Trisomy 18 circle, there are a number of mama's that are pregnant with rainbow babies. One mama posted this picture which has this explanation on it:

"Rainbow Babies" is the understanding that the beauty of a rainbow does not negate the ravages of the storm. When a rainbow appears, it doesn't mean the storm never happened or that the family is not still dealing with the aftermath. What it means is that something beautiful and full of light has appeared in the midst of darkness and clouds. Storm clouds may still hover but the rainbow provides a counterbalance of color, energy and hope."

I think that's beautiful. My emotions are all jumbled up about losing Lilly and being pregnant and these words just help some of that fall into place in my mind.

[God speaking after the flood] "I have set my rainbow in the clouds, and it will be the sign of the covenant between me and the earth." - Genesis 9:13

Sunday, March 18, 2012

Trisomy 18 Awareness Day - March 18

The month of March is "Trisomy Awareness Month." The different trisomies then have their different days. Today is March 18 so it is Trisomy 18 awareness day.

I don't know who assigns different things the different colors of ribbon which we see so much of now. But whoever did, choose blue for Trisomy 18. My daughter and I wore blue ribbons on our clothes today. I also put a little blue ribbon on our "Lilly bear." (I found this bear in a thrift shop and it just called to me. You know - it's so fun that Lilly was born on July 4 - but I have to be careful not to get sucked into buying every red, white, & blue thing I see!)

There is a section of this blog that only I can see called "Stats." It tells me several things about the blog including how many people view it each day and what the most popular posts are. On September 9, 2010, I did a post describing Lilly's Trisomy 18 features. That has remained the post I get the most hits on. You can read it here. Be warned! The Lilly you see there is super skinny! (She had dropped from her 5 lbs. 4 oz. birth weight to just under 5 lbs.) After you look at those pictures, be sure to scroll to the top of the blog and remind yourself of how far she came in her 17 months! (13 lbs., fat rolls, smiling, and interactive!)

The day after Lilly died, another little girl named Julia, that had Trisomy 18, suddenly died. I've since gotten to know her mama. I love to see pictures of Julia - she reminds me a lot of Lilly. And interestingly, Julia's family lives where I grew up. Her mama did a good post today called "18 Things You Should Know About Trisomy 18." You can read that list here. Julia's mama liked our idea of doing a memory tree and you can see the one they did for Julia here. The tree style is completely different from Lilly's tree and very pretty. Julia's mama sweetly sent us an ornament like one she hung on Julia's tree - it has a butterfly and says "Hope." It will be perfect for May and maybe June too when we put some butterflies on the tree.

"Hope" is a wonderful thing. There is so much negativity about having a child with a trisomy. Even though they do not have "normal" lives, I can tell you, these children are an enormous blessing. They will change your life and make you a better person. They will touch people all around you. Or even all over the world! (I am still amazed at how many readers this Lilly blog has of people from other countries.) If you find yourself pregnant and are told your baby has a trisomy - don't give up and think the worst. Have HOPE.

"Rejoice in hope, be patient in tribulation, be constant in prayer." - Romans 12:12

Friday, March 16, 2012

Lilly was an author?!

This past Monday we visited Lilly's grave. We took the beautiful "Lilly themed/colored" wreath we had been given as a gift. I had wired it well to the wreath stand and I pushed the bottom parts of the stand a couple inches down into the ground. I hope that it is secure!

Lilly is buried at Oakdale Cemetery in Washington, North Carolina. It is an old cemetery with quite a number of people buried in the 1800s. There is a confederate monument there. There are a number of wonderful, big old trees. I've realized that trees in a cemetery are useful in many ways - one way being that they help block wind! But it's still pretty windy there. I hope the wreath lasts a long time anyway. (I'm thinking of the beautiful flowers we took that blew away.)

While we were there we cleaned up Lilly's stone a little. There was some dirt in the lettering. She is buried next to my husband's youngest sister and her stone needed a lot of cleaning and the grass cleared back some from it. I had never really thought about grave upkeep before this year. But it's definitely something I want to do throughout my life.

After being at Lilly's grave for awhile, we continued on to my mother-in-law's house and stayed there through yesterday. She has several dolls displayed in her home and one kept catching my attention. I wasn't sure why at first but then it suddenly it me - this doll (2nd photo) reminded me of Lilly! Something about the little mouth and nose, and big eyes, something in the expression - it's just Lilly-ish.

On a recent blogpost, my sister-in-law N. left a really neat comment :

Happy Memories.... My friend Lou from England told me last night that she was out and about yesterday and saw a lady with a baby. Lou was intrigued by this baby which reminded her so much of Lilly and evidently was staring so, that the mother finally told her to "take a picture!". The mother thought Lou was being rude. Lou apologized but the mother was offended and told her that her daughter was not a freak show. When they got outside of whatever store they had been in, Lou approached the mother again and apologized and asked if her daughter had Trisomy. The mom was shocked and pleased and asked if Lou was a doctor. She'd never had anyone know about Trisomy besides doctors. This lead to a short discussion of how Lou knew about Trisomy and the mother was so touched that Lou cared and she WANTED to talk about her daughter. :) Thank you for sharing Lilly with the world and educating the public. Including myself.

I was so glad N. shared this! And it shows you - so many of these Trisomy 18 babies just have so many similar features. So that Lou, who had seen pictures of Lilly, was able to recognize one in public! I love it. Trisomy 18 awareness at a "grassroots" level.

My mother-in-law gave me a delightful book by an author named Lillian Hollowell! (Lilly's full name is "Lillian Eva Hollowell.") I was so surprised when she told me recently about the book, which she bought off Ebay. If it weren't such an old book I'd be suspicious that our Lilly had been busy working on it at night while we slept. :)

The book is titled A Book of Children's Literature and was published in 1939. The author complied many many classic stories, prose, poetry, and biographies for the book. We will be using it for homeschool for sure!

Yesterday marked 3 months that Lilly has been in heaven. It seems like forever ago. We remain grateful for every second we had with her. I think of Lilly when I read this scripture:

"Thanks be to God for his indescribable gift!" - 2 Corinthians 9:15

Sunday, March 11, 2012

A wreath and a survey

Last month we received this beautiful "Lilly colored/themed" wreath as a gift. Three families bid on it together at an auction that the private school that my husband works for had. The families bought it thinking we might like it for Lilly's grave. We were so touched by their thoughtfulness.

We hung the wreath up in our living room to enjoy for several weeks. Yesterday I took it down and secured it well (I hope!) with wire onto a wreath stand. We are planning to go visit Lilly's grave tomorrow and are taking the wreath. I am so looking forward to it.

Recently on the Trisomy 18 Mommies group on Facebook, someone asked the question if during ultrsounds, if we were told if their baby had a two or three vessel cord. (Normally there are 2 arteries and 1 vein in the umbilical cord.) The results were interesting in that the majority of parents responded that they had been told they only had a two vessel cord. I had a two vessel cord with Lilly. It really is interesting all the similiarities so many of our Trisomy 18 babies have in the womb, that can be identified by ultrasound. (And interesting that so many babies problems are never even noticed on ultrasound.)

Ultrasound is amazing, but not perfect. However, God is perfect! Look at verse 15 in particular here:

"13 For you created my inmost being; you knit me together in my mother’s womb. 14 I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. 15 My frame was not hidden from you when I was made in the secret place, when I was woven together in the depths of the earth." - Psalm 139:13-15

I used verse 13 on my latest version of Lilly's business card:

Friday, March 9, 2012

Dresser display

Last week I put the "Lilly colored" tablerunner that we recently received as a gift on my dresser. Then I arranged some of Lilly's things on it. (I hope to eventually have room to do this on a table in the main part of the house.) I love it! :) Some of the things I have: Lilly's sunglasses and sun hat, her Easter bunny hat, her last pair of slippers, her hairbrush, the teddy bear that came with her coffin (the bear is wearing a hat knitted by my friend K.L. and Lilly wore it after she was born), Lilly's hat from the hospital the day she was born, the red/white/blue balloon weight from her first birthday, both her red and black pairs of Mary Janes (also knitted by K.L.) - they are in the "Lilly colored" fabric bowl we received as a gift along with her first pair of hand splints, and a couple cherubs that I picked up at thrift shops. I also have things that belonged to Lilly's namesakes. I have the Bible that belonged to her great-great grandmother Lillian, and two pretty glasses that were her great-grandmother Eva's. Inside one glass are a couple of her "button buddies" (g-tube covers) and inside the other is her very first bracelet from M.B.

For many years I have had a framed card of Mary kissing Jesus which says "Kissing the face of God." It was funny - just the other day, my aunt e-mailed me that picture (without the words on the card I have) and said the baby reminded her of Lilly!

Yesterday we attended the funeral of the 7 week old baby from church that died suddenly on Sunday. It was hard. And of course as hard as it was for me I know it was so much harder on the poor parents. A big part that made it hard for me was that it was held at the same church that Lilly's funeral was. Plus the same pastor spoke, we had one of the same song leaders, and the little baby had what looked like the same coffin as Lilly (or pretty close) sitting in the same place. So many similarities. I found that it was best for me not to look at the coffin. The pastor mentioned Lilly at one point and I was so happy yet that really made me cry. I guess because it's been a bit less than 3 months and everything is still so raw. Or maybe it will always be like this?

Part of my sadness was for the young parents that lost their little boy. We know how they feel. To an extent. I believe we all have our own "twist" on grieving. There are similarities. But each death is a little different and with that brings it's own set of grief. I've been thinking so much of possible things our family can do to help this couple. What gifts might help. What things will bring comfort. What we can say and do. In thinking about a number of ideas, I keep thinking about how everyone is different in what means something and what doesn't. (I even see this in my own family.) But I can say that it's the "thought that counts" is huge.

And that brings me back to something I've been trying to share through this blog because I don't think most of us really know how to handle death. Something that I am still learning about. But basically, when someone is hurt and grieving just do something. Send a card, call them, visit them, email - in the least acknowledge what has happened. If you're a Christian - tell them you're praying for them. That is so comforting. Make or buy a special gift. (We love that Lilly was born on July 4 - that gives her a certain "theme" that makes Independence day stuff easy and fitting to buy to remember her.) Remember them on anniversaries. I recently compiled a list of Trisomy parents I know and their children's birth and (if it's happened yet) death dates. I'm doing a "card ministry" to each on these dates, just to let them know their children are being remembered and we're praying for their family.

I know it can feel really awkward to be around grieving people and none of us want to say the wrong thing. But at least say "I'm sorry." And it's great if you can share a good memory you have about the person that died.

I'm not trying to beat this point to death. :) I'm just sharing what I've learned and am still learning. I regret that there were times in my past that I was probably not as sensitive as I should have been to others. I hope that I am no longer that way.

"Rejoice with those who rejoice; mourn with those who mourn." - Romans 12:15

Thursday, March 8, 2012

Oxford University ethicists: Parents should be allowed to kill newborns

Photo: Happy and alert Lilly, a few hours after being born. July 4, 2010.

A group of medical ethicists from Oxford now say killing babies is no different from abortion. (Link to U.K. newspaper article here.) That statement is actually very intriguing - if it is no different - then does it mean they would consider abortion wrong? No. "Parents should be allowed to have their newborn babies killed because they are 'morally irrelevant.'" They argue that newborns are not “actual persons” but “potential persons”. They said: “Both a fetus and a newborn certainly are human beings and potential persons, but neither is a ‘person’ in the sense of ‘subject of a moral right to life’."

They continued: “We take ‘person’ to mean an individual who is capable of attributing to her own existence some (at least) basic value such that being deprived of this existence represents a loss to her.” They believe it is “not possible to damage a newborn by preventing her from developing the potentiality to become a person in the morally relevant sense.” The ethicists, who published their "findings" in the Journal of Medical Ethics concluded: “what we call ‘after-birth abortion’ (killing a newborn) should be permissible in all the cases where abortion is, including cases where the newborn is not disabled.”

The ethicists' conclusions are probably shocking to many. But I imagine that sadly, they will eventually be accepted and this country - and others - will follow suit. I believe it will then lead to killing a lot more people than just newborns. What about a toddler or a teenager or an adult that becomes severally disabled through an accident? They won't be valuable anymore. What about someone injured in an accident that can no longer use their arms and legs? Their brain might work the same, but wow, it would cost a lot to constantly care for them. What about someone, who is physically just fine, but has a really low IQ? Or someone that has an extreme mental disorder? What about someone that has repeatedly committed horrible crimes and has finally been sent to prison for life? These people aren't necessarily worth any more than a newborn that no one truly knows the potential of.

My point is, when would the acceptable murdering of "morally irrelevant" people stop? And who exactly will be given the power to judge everyone and determine whether they should live or die? There are countless dangers in this. But, as people seem content to give up more and more personal freedoms to the government, and move away from believing in morality, there will be no stopping this kind of thing.

"Woe to those who call evil good and good evil, who put darkness for light and light for darkness, who put bitter for sweet and sweet for bitter." - Isaiah 5:20

Wednesday, March 7, 2012

Happy memories - doctor appointments

Trisomy Awareness Month continues. My daughter made a blue ribbon for Trisomy 18. Unfortunately we didn't have any darker blue ribbon on hand.

When I turned my calendar page to March last Thursday, I found myself saying "awwww ..." Lilly had had four doctor's appointments scheduled this month. (audiologist, ENT, genetic pediatrician, and cardiologist) Appointments were sort of a hassle and could be tiring - some were an hour away. And I was always concerned about exposing Lilly to the germs in those places. But I really did love our time together and showing her off. Most of her appointments went very very well and the doctors would be just beaming about how well she was doing. I always felt so proud of Lilly! I loved that she was helping to break most of those doctors beliefs of Trisomy 18.

I remember one doctor was initially very hesitant about Lilly. He was polite but it was obvious he didn't think she'd live long at all. He was a statistics guy. We firmly but politely made it clear that we were going to do everything we could to help Lilly. We did not know how long she would live, but we would fight for every day. When Lilly was two months old she got an NG tube for feeds and shortly after that she had surgery to put a pulmonary artery band on her heart. She really started doing well after that. As she grew and became more interactive, this particular doctor become more excited about Lilly every time we saw him. One time Lilly's regular pediatrician told me this doctor had called her with an update and he had just become so impressed with her. I miss taking Lilly to see him and his big smile when he'd check her out!

Ha! I never thought I'd consider doctors appointments as "happy memories" but I do. :)

Anonymous has been busy at work again this month making a shamrock ornament for Lilly's memory tree. She left it at work for my husband to find. Thank you Anonymous! You did a great job!

"At all times and for everything giving thanks in the name of our Lord Jesus Christ to God the Father." - Ephesians 5:20

Monday, March 5, 2012

Lilly's dress display and a tragedy in Iraq

My mother-in-law has a rack on the wall of her bedroom where she has hung some of her children's baby clothes. I always thought it looked really sweet. I decided I wanted to do that with Lilly's nicest dresses. My mother-in-law gave me a rack back in January and shortly after that my husband hung it on the wall for me. That rack remained empty until this past Saturday. I'm not sure why but I just wasn't ready to get the dresses out of my son's closet and hang them up. But I did so Saturday and was very glad. They're all so sweet and beautiful and each one makes me think of Lilly in a different stage of her short life.

Over the dresses I hung a plaque that someone painted for her. It has Lilly's initials: LEH. And around it are painted lily flowers. It looks perfect over the dresses.

I know there are some people that deal with a death by packing away everything that belonged to that person. I'm the opposite. I did pack some things up. But I also am working other things into the decor around the house. A touch of Lilly in almost every room. We like and need that.

In yesterday's post I mentioned the tragedy of the little 7 week old baby that unexpectedly died Then yesterday evening we learned more sad news.

For years my family has been praying for Jeremiah Small, a 33 year old American man who has been teaching at the Classical School of the Medes in Sulymania, Iraq. Last evening we found out that Jeremiah had been shot and killed by a student.

In March of 2006, by working with Servant Group International, my husband spent two weeks at this school in northern Iraq offering suggestions and helping with training. (He works as the middle school administrator and athletic director at a classical Christian school here in N.C.) He got to know Jeremiah at that time. My husband's luggage had been lost on the trip (not uncommon in going to Iraq!) and he had to borrow clothes from Jeremiah. The joke was that though Jeremiah's last name was "Small" - he was not. He was quite a tall man. My husband is short and had to roll up the pants legs on the pants he borrowed. He really enjoyed getting to know Jeremiah and admired his dedication to teaching at the Classical School of the Medes and his strong Christian faith.

A few years after that, I met Jeremiah at an Association of Classical Christian Schools conference I was at with my husband in Texas. We all had a rather lengthy conversation with him and I too was struck by Jeremiah's strong faith and his goals for his life. He was the kind of man that any parent would be so proud to call their son.

Last Thursday, while Jeremiah was in the front of his class praying, a student stood up and shot him. The student then shot himself.

More sadness. More tragedy. I know the sun shines just as bright as it did before Lilly died, but it doesn't seem to. Life does not seem to have the same joy in it anymore. And being aware of so many other deaths and tragedies makes it duller. I want to be joyful for my family. I want my kids to have a happy mamma. And I think I'm doing a pretty good job of that as I do love them and enjoy them. But life on earth just seems a whole lot less interesting now. As we like to say in our house, "Come quickly Lord Jesus."

[Jesus speaking] "My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am." - John 14:2-3

Here are a couple links to news stories about Jeremiah. Here is an article published in World. This article was written by a student and published in The Kurdistan Tribune. Jeremiah's parents were interviewed in this article.

I commented to my husband that I would be afraid to be an American teacher at that school in Iraq now. But he believes that the schools (in Northern Iraq) are much safer than the typical public school in this country. What a world we live in. It honestly makes me feel better knowing that Lilly is safe in heaven and none of this evil will ever touch her.

Sunday, March 4, 2012

Lilly's memorial tree - March

Today is March 4. Lilly would have been 20 months old today if she were still on earth. We know she's having a wonderful day in heaven!

We honored Lilly by putting up decorations for March on her memorial tree. We went with a St. Patrick's day theme since we like that day and it is mine and my husband's wedding anniversary. We like Saint Patrick too! If you want read a really good book about him, that cuts through all the myths, try David Bercot's book Let Me Die in Ireland: The True Story of Patrick.

My daughter, aunt, and I made a lot of shamrock and green butterfly ornaments with cardstock. T.W. sent us two ornaments she made out of pink and green clips that she wound onto shamrock garland. And I also had a dozen plastic shamrock necklaces which I cut and hung like garland. Of course green things don't show up great on a green tree but it's OK.

We learned some very sad news when we arrived at church this morning. A young couple's 7 week old baby boy had died this morning. Completely unexpectedly. We do not know why yet. My heart hurts so bad for this couple. We know what it feels like. And yet they have what is maybe an additional pain. They now know what it is like to lose a child - unexpectedly - that they had no reason to think would die anytime soon.

The night Lilly died was very very surprising to us. We weren't expecting it right then. And yet, there was always that little subconscious part of me that wondered, almost every day, "is this going to be the day?" It was like a shadow that lived with us.

In talking about our "new baby" (I'm 12 weeks pregnant) my 3 year old son will sometimes tell me things like "when the new baby dies, it will get to see Lilly!" I usually smile with him. But I have also tried to tell him that most babies don't die young. Lilly was special. Lilly had Trisomy 18. But death seems so normal to my son, who went to funerals of 3 family members last year within 6 months. He sees death as something joyful. "Mamma - they get to be with Jesus!"

Death was such a normal part of life in the past. But in our modern age we tend to think doctors can fix most everything. And we will live normal lives. And our children will outlive us. Accidents, cancer - they happen to other people, not us. We tend to want to cover up death. We feel uncomfortable around others who have just lost loved ones. We act like death isn't natural.

Really, all that is ridiculous. It is our modern thinking that is "backwards." Not the past way of thinking. Life truly is fragile. We are not invincible. God has a plan for every one of us and we never know when He will call us home.

"Show me, LORD, my life’s end and the number of my days; let me know how fleeting my life is." - Psalm 39:4

Friday, March 2, 2012

March is Trisomy Awareness Month

March is Trisomy awareness month. It is for awareness/education about trisomies. Here is an article describing it. Blue is the ribbon color for Trisomy 18. (Yay! My favorite color!)

From what I've read, the majority of babies that are diagnosed with a Trisomy are aborted. I am still astounded that 90% of supposed Down Syndrome babies are aborted. The above article mentions that, plus I was reminded of that by Faith's dad in a recent comment. And speaking of Faith (she is 3 years old and has Trisomy 18) she is back in the hospital with her bleeding problem again. Please pray the doctors would finally figure out how to treat her!

Here are two pictures of a happy smiling Lilly, that T. took back in August of last year. This is one Trisomy baby that was sure happy to be alive! I miss that smiling face and cute, chubby, kissable cheeks. And yes it still hurts that she's not here with us anymore. But we remain grateful for every second we had with her. 529 days of holding Lilly!

I received the very last picture in a forward recently. It is what a baby of a pregnant mom that is 12 weeks along looks like. I'm at 12 weeks today and my kids and I find the picture fascinating!

"Behold, children are a heritage from the Lord, The fruit of the womb is a reward." - Psalm 127:3

Many people have been asking if I am going to have an ultrasound and if so when and do we want to know the sex of the baby. Yes to both questions. The ultrasound will be in April - maybe the 2nd week. And yes, I'd like to know if it's a boy or girl. That way I know what kind of clothes to unpack to have ready.

Finally, here is a quote I read recently that I liked:

"Parents are similar to a candle. God sends a child with Trisomy to be the flame that ignites the parent for a purpose!"