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...
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)
I think your ideas are fantastic. I am not a crafty person but my BFF is. So I ask her for her thoughts about what could be made to sell. It is terribly sad that the hospital is not able to offer the support group anymore. I would be glad to help with this. Maybe it could be something ESPS could offer. Or maybe offer the space to have the group.
ReplyDeleteI have a small box too. It holds the results of the HcG levels on all of my miscarriages along with a sono of the first baby and my journals. This box was handmade as a wedding present. While it's intention was likely very different when it was made, it holds very precious memories of our marriage.
Thank you so much for sharing this with us.
I've been looking forward to this post. I have started making burial clothing for tiny babies as well as things that might be useful for preemie babies. I'll bring them in to show you and find out if they are what you are thinking of. I think your idea of using your social work skills to help other mothers is splendid. I'll tell you about my daughter-in-law's experience and you'll see why I thought you would probably be headed this way. I'm not a good one to get ideas for a fundraiser but once someone has the ideas, I can help. Thanks for sharing. Karen
ReplyDeleteMy BFF's initial thought...."What about a stretchy beaded ring? The base of the ring could be beads in the color of the month the child would have been born and the center of the ring would either be a larger pink or blue bead representing the child."
ReplyDeleteWhat do you think?
Wendy I think your ideas are wonderful,especially something for parents that have lost a child. I know how much i treasure the blanket the hospital gave me when Luke passed away, I also have his hand done in plaster in a beautiful box that was given by the hospital. I would love to help you in any way I can. Please contact me Michelle has my number. Thank You for sharing your thoughts and memories with everyone. I know you are helping other parents that have felt this horrible pain. I know reading your blog is helping me and it has been 6 years. You are in my prayers and in my heart.
ReplyDeleteLisa
Great ideas Wendy! Here are a few more ideas... Educating the community by a WBOC interview, Public Access Television or at the library. A yearly walk. Contact the March of Dimes and see if they have any ideas or can help in any way. The website has some ideas under "ideas for fundraising." I see some event ideas on the Trisomy 18 website too. I'll keep thinking...
ReplyDeletelove the ideas! i'm not very good with fundraising ideas, but would be willing to help once ideas are in place! as for donations to the hospital~i think the bracelets w/ the baby's birthstone is a great idea. i have keychains that were handmade using the same idea. i would love to be a part/help with the support group. i have a little experience helping lead a ladies support group, though it isn't for infant loss/miscarriage.
ReplyDeleteyou are truly allowing god to use your pain for His good and i'm thankful we met :-)
Wendy, you continue to be an inspiration. So many people would wallow in the grief, but you're using your experience to help other families in similar situations. I am humbled by your courage and generosity. My mother-in-law ran the Salisbury chapter of the March of Dimes for many years and was most recently the head of fundraising for the state of Maryland. Although she retired a few years ago, she keeps in contact with many of her previous colleagues and, with her fundraising experience, could potentially be a valuable resource. If you're interested, I'm happy to put you in contact with her, or ask her for any information that could be useful to your cause.
ReplyDeleteMichelle- That would be wonderful! I'll send you an email with some very preliminary thoughts to see if she could help in any way.
ReplyDeleteThank you all for your ideas! Mary and Karen- I'll be talking more to you both about your ideas. You're getting my creativity brewing!! :)