Our daughter, Lily Grace, was born to heaven on June 6, 2010. She was diagnosed with alobar holoprosencephaly (HPE) and a rare arrangment of trisomy 18 (isochrome 18q). To learn more about our experience, you may want to start at the beginning. Read Lily's Story: from Beginning to End, which is one of the first blog entries on June 24, 2010.


He heals the brokenhearted and binds up their wounds. Psalm 147:3

Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. 2 Corinthians 4:16-18

He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalm 46:1


Tuesday, August 31, 2010

A picture says 1000 words


My adorable 4 year old niece, Caroline, recently made this for me. She seemed so excited to present it to me, and as I told her how beautiful it was and how much I loved it, I realized that the portrait she made of me was crying. I don't really recall crying in front of her, but it is possible that I did because several weeks of my life are now kind of a blur. Once she left the room, I curiously asked my sister if she knew why she chose to draw tears on my portrait. She had also noticed this and when she asked Caroline about it, she simply replied it was because of the baby. Wow. Even a 4 year old is perceptive enough to understand how much of an impact Lily has made.
Lily is so lucky to have such loving and thoughtful cousins! This is definitely going in Lily's box of memories. Thank you sweet Caroline- I love you lots!!

Tuesday, August 24, 2010

feeling sorry for myself

It's another bad day today. I really miss my baby. I guess it comes in waves.

I was super excited yesterday after I talked to several people about some of my fundraising ideas, but then I got home for the day and was going through the mail.

Another medical bill.

Really?!?? I do not remember getting all these bills when Owen was born, and at least I got to bring him home. Why does the price of my loss keep adding up? This is getting ridiculous. We've already paid more than $700 for pre delivery procedures, and now we have $700 in medical bills from the delivery. I am still expecting to receive a couple more based on the paperwork I've gotten in the mail. I would pay any price to have my baby with me, but I am tired of paying for my grief. Opening that bill was the millionth reminder that my baby is gone.

Haven't I paid the price already?

Sunday, August 22, 2010

Some Mothers Get Babies With Something More
16 Aug

Written by: Lori BorgmanColumnist and Speaker

My friend is expecting her first child. People keep asking what she wants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the pages of time. She says it doesn’t matter whether it’s a boy or a girl. She just wants it to have ten fingers and ten toes.Of course, that’s what she says. That’s what mothers have always said. Mothers lie. Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes, satin skin and straight feet.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.Call it greed if you want, but we mothers want what we want. Some mothers get babies with something more.Some mothers get babies with conditions they can’t pronounce, a spine that didn’t fuse, a missing chromosome, a palette that didn’t close or a tiny crooked foot or two.Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn’t see the kick ball coming and it knocked the wind clean out of you.Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news.It can’t be possible! That doesn’t run in our family. Can this really be happening in our lifetime?I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It’s not a lust thing; it’s a wondrous thing. The athletes appear as specimens without flaw — rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.As I’ve told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there’s no such thing as a perfect body. Every body will bear something at come time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery.The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it.Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear.I wonder how you endure the clichés and the platitudes, well-intentioned souls explaining how God is at work when you’ve occasionally questioned if God is on strike.I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you’re ordinary. You snap, you bark, you bite. You didn’t volunteer for this, you didn’t jump up and down in the motherhood line yelling, “Choose me, God. Choose me! I’ve got what it takes.” You’re a woman who doesn’t have time to step back and put things in perspective, so, please, let me do it for you.From where I sit, you’re way ahead of the pack. You’ve developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule.You can be warm and tender one minute, and when circumstances require, intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You’re a neighbor, a friend, a stranger I pass at the mall. You’re the woman I sit next to at church, my cousin and my sister-in-law. You’re a woman who wanted ten fingers and ten toes, and got something more. You’re a wonder.

Thursday, August 19, 2010

should've, would've, could've

It's one of those days...just when I think I'm doing pretty well...

I looked at my calendar today and realized

I should've been 30 weeks pregnant today. I would've felt my baby's kicks. I could've been decorating her nursery and buying cute pink clothes.

Instead, I am thinking of ways to make money that can be donated to help families whose babies won't live. I love that this is my new passion, but I hate that this is the reason.

Tomorrow will be a better day. It has to be.

Monday, August 16, 2010

Healing my heart with hope to help others

This post took a little longer than I had planned. I want to thank everyone who has been reading, and waiting for this next post. I took a little detour to Sesame Place with my toddler, and we got side tracked by all kinds of furry characters, but we are back and I'm ready to get some things rolling!

I've mentioned that I want to give back to the community, and I hope I'm not biting off more than I can chew, but my excitement is causing me to want to give in so many different directions, so this is where I need some help. I'll talk about all of the different ideas that I have, and I really want your thoughts and feedback. I am very much in the beginning stages of brainstorming, so these are just some general thoughts. I really would appreciate any ideas.

First, I want to continue to help the Trisomy 18 Foundation. It is my understanding that Trisomy 18 is the condition that caused Lily's other abnormalities (specifically holoprosencephaly and the kidney defects). Following Lily's death, we have received multiple donations in her honor to the trisomy foundation. I would love to continue to collect money for this cause. Lily has a legacy page set up on their website so that we can keep track of all donations made in her memory. This money will allow for further research to be done as well as for assistance and support to be offered to the families of other children with this diagnosis. It will also allow for awareness and education on this diagnosis. Like many others, I was not even aware of what this diagnosis was or what it meant for our daughter and our family. So, I am brainstorming ideas for fundraisers that will help us to raise money that can be given to this foundation in Lily's honor. Now, I don't want to do the typical fundraisers...no bake sales, yard sales, car washes, or dinners. I want to do something a little more creative. I am a little bit of a crafty person, so making something to sell could be an option. I read about another mom who makes hair bows and sells them for $5 to raise money for her organization called Lacey's Love. Lacey is her daughter, who is diagnosed with holoprosencephaly (HPE). Her mom is raising money to help other children with special needs to be able to get treatment, therapy and equipment. I love the idea of selling something hand made to raise funds for such a heart warming cause!

In addition to raising funds for the Trisomy Foundation, I also want to give back to my local hospital, specifically to the STAR (special treasures are remembered) program. This is the program set up to work with families when a baby has passed away. A significant part of this program operates off of donations. I received many items while I was in the hospital that were provided by donation. Lily's baptism gown and her blanket and hat were all lovingly hand made and donated to the hospital. We also received a stuffed teddy bear given by another family who lost their precious baby. I would love to contribute something to the hospital that they could give to other families in their time of loss to bring some sense of comfort. These items are the only tangible reminders that I have of my time with my baby, and they do bring me peace. I am slightly embarrased to admit that I have slept with Lily's hand knit blanket nearly evey night since I said goodbye to her. That blanket was wrapped around my baby when I held her. She had pictures taken in that blanket. When I see it, I remember her tiny little body peacefully resting in the midst of the soft yarn. I like to hold it close, and sleep with it near my heart. It is the most comfort that I can get without my baby to snuggle with. My point in sharing this is to reiterate that there are ways to offer solace to those grieving without having to say a word. People probably have no idea the impact that these items can have. For me, I have put all of Lily's memories in a container. It isn't much...my pregnancy journal full of my thoughts and feelings both during the time that we thought everything was okay and during the time that we were unsure about Lily's future, sonogram pictures, articles and information on holoprosenchephaly and trisomy 18, tons of cards, hospital stuff, Lily's certificates of baptism and cremation, copies of her obituary, and our treasured pictures of our baby girl. Sometimes, I look at this container and think about how weird it is that her life is summed up by the content kept inside. When I start to think about how unfair that is, I tell myself that considering how brief her time here was, she has a lot to show for those 19 weeks. It is for this reason that I want to come up with some ideas for something I may be able to offer to others. I'd like to think of something that the hospital can give to other families just as I received things given to me. One of my regrets from this experience is not getting more pictures of my child. I realize this may seem odd to some of you that I would want pictures of my deceased baby, and to be honest, I never anticipated that I would have wanted them either, but at this point, it is the only way for me to remember my own daughter's face. I have learned a lot and done a lot of research on grieving the loss of an infant and it is actually quite common to have photos taken of your child. In fact there is a professional organization designed just for this purpose. Unfortunately, we do not have such an organization in this area, but I do wish that I had the opportunity to have professional photos taken. Keep this in mind as you help me to brainstorm areas for giving...


Finally, many of you reading this are aware that I am a licensed clinical social worker, and I am trained to provide therapy to individuals, families and groups. It has been both a blessing and a curse to me that I have several therapist friends. It was great to return to work surrounded by other therapists, but at the same time, I certainly did not want to be a burden on my friends by using them for counseling. The hospital offered a support group in the past, but it is no longer running. At some point, I would love to expand my practice to include working with other mothers who have lost a baby. I realize that I am not emotionally in a place to be the most effective therapist for someone else in this situation, but I look forward to that time in the future. I am also very interested in facilitating a support group. I may talk with the hospital about coordinating something with the STAR program to bring this service back to the community. If any of you have any ideas about this please let me know. I know some people who were part of this group at the hospital in the past, and I would love to talk to you more to get some ideas. Also, if any of you have experienced this kind of loss and have some thoughts on being part of a group like this, please feel free to email me. I'd love to hear from you!

So, I am looking for any and all ideas for ways to raise money for the Trisomy foundation, an item that I could offer for the hospital to distribute as needed, and ideas for getting a group started. If you have any thoughts on any of these areas, please, please please comment!! I will keep you all updated on my plans and progress.

Thou hast enlarged me when I was in distress. (Psalm 4:1 KJV)

Friday, August 6, 2010

2 Months

Two months have gone by since I said goodbye to my Lily. It's amazing how much has changed for me during this time. I have felt myself move through the stages of grief, and am proud to say that I am hopeful (at least today). I am hopeful that Lily's existence served a purpose. She has taught me more about myself, my purpose, and the things that really matter. She gave me a new perspective and a new appreciation for life. I believe she accomplished more in her brief time here than I have in my 32 years. She changed my life. She gave me a gift that I will always be grateful for.

I am determined to share my story with others, and to tell others about my daughter because she deserves to be known. I want to recognize her for all that she has done for me and for my family.

My sister-in-law brought us a book of daily devotionals, and this is an excerpt from the devotional for today, August 6. "Sometimes God causes severe winds of trial to blow upon His children to develop their gifts. Just as a torch burns more brightly when waved back and forth, and just as a juniper plant smells sweetest when thrown into the flames, so the richest qualities of a Christian often arise under the strong winds of suffering and adversity. Bruised hearts often emit the fragrance that God loves to smell." How fitting!

I am empowered to move forward and to help someone else. I've been doing a lot of thinking lately, and I am ready to use my experience to make a difference for someone else, but I could use some help. I'll post another blog entry explaining my thoughts, and asking for some feedback, so get your thinking caps on....I've got big plans!