I have had no idea how to share - or if I should share - or when to share - what is going on with me in regards to the nonprofit I started for Rachel's legacy... and I still don't, but a big part of the entire thing is wrapped up in what happened at the baby remembrance ceremony I held for local baby loss moms on August 1st and I really have been wanting to share about that.... and so I'm going to do what I have always done here and just share my heart - and try to do it in a condensed version since it's been a LONG couple of months for me and I just want to tell you about the butterfly release and have it make sense.
I decided to do a virtual race for one reason - God was leading me away from the big event I usually put on but I have to fund raise in order to keep a nonprofit funded and to do ministry through it. I explained all of that in my post announcing it. I honestly didn't want to do anything. My time is already completely full with my own life - and I love doing things for Rachel, but I don't need to do them like I did the first couple of years. Now I just do it because I love to help people and this is the ministry God set before me. The baby loss community.
As the event date got close, my Grandpa died, I was in a rut emotionally with losing him and it seemed as though the race was not getting the response I had expected - so I was just really discouraged with everything.
Less than two weeks before the race start date, someone on my board of directors for the nonprofit told me that her husband wouldn't allow her to register for the event because he doesn't care about the success of the nonprofit and didn't like the virtual race idea. She said he thought it came across as having the wrong reasons for doing it and that she thought that was why there was so few people signing up. She said the reason she didn't fill me in on this 'insight' sooner was because she thought it would be successful when I first shared the idea, but now that it's not has decided this is why and that she didn't share the same feelings as her husband, but that he is very judgmental and she had to submit to his headship and so she couldn't support our ONLY fundraiser for the year. (with $20, mind you) I told her that if she isn't allowed to support our nonprofit because her husband doesn't care about the success of it, she should resign and shouldn't be on the board.
She refused and it only got worse from there... She said she discovered in her research that her term was not up as I had thought based on an email I had stating it started in July 2013 because we didn't formally vote on that in person until Nov 2013 (mostly bc the meeting got pushed back when my niece had a massive stroke, but I guess that doesn't matter either as long as her 'rights' are still there) She said that she found though that *my* term had not be reelected or renewed and she wanted to get a disinterested third party to assess the situation. Then I found out that she contacted an old board member saying she was just trying to update the files and needed information from before her term started in 2013, specifically when my term was voted in. The only motive I can see in this would be to try to get information to use against me so she could prove that she was rightfully allowed on the board and I - Rachel's mother - was not. Unfortunately for her, our bylaws didn't back her theory.
That is the short version of what was a complete nightmare the week of my birthday, E's birthday, my ultrasound with this baby, and Rachel's diagnosis anniversary. And all caused by a family who we considered to be close friends of our family, let alone someone who I believed respected and took my God-given job as Rachel's Mama seriously and who I thought to be someone who I could trust with Rachel's name and my heart. To see the conversations that she had, in my opinion completely lacking integrity and care for me or Rachel - and with only bad intentions towards us - was one of the worst betrayals I've experienced yet on this journey.
In the meantime, I'm trying to go thru this without telling anyone, but it was obvious I was having a hard time and everyone assumed it was because I wasn't getting a good response from the virtual race. I was getting messages from people, including some I don't even know, who don't know me or what was really happening, telling me I needed to just accept that people can't always do what I want them to... and it was so much bigger than that. So much deeper... and by that point, I honestly didn't give a care at all if the race even happened, how much it made, or if anyone participated at all. The entire thing was so tainted with her careless words in my mind and heart, it just hurt and I just wanted it to be over.
All that to say that as the baby remembrance ceremony approached, I honestly didn't want to do it. I considered multiple times canceling - right up to that very morning. I told Matt I was going to cancel and see if I could get a refund on the butterflies and he was pretty certain that wasn't right to do. I told the board I wanted to cancel and they were pretty certain I shouldn't do that. Everyone but me was pretty certain the show must go on - but I'm the one and only person who ever has to put the show on - and all I wanted to do was crawl in a hole and hide. I was feeling so used, so uncared for, so disregarded... so betrayed. I was still unsure of what would happen with the board or what she was trying to pull with her gathering of information from old members. I had no idea what would happen the next day when we had our meeting to vote her off. To say my heart was heavy would be a serious understatement. I also had been so distracted from what I needed to be doing with all of this unnecessary drama that I didn't have a single thing prepared. I didn't know what music I would play... or how I would play it. I didn't know what I would say... or how/when I would say it. I didn't know how I would recognize each baby... or how I would include Rachel - or if I even wanted to. I just wanted to get there, get it done and go home to cry.
But I have always had a way of pulling things together last minute, under pressure... and so the night before the event, I was at Walmart at 9 pm buying supplies... and I was up until 2am creating what turned out to be beautifully labeled CD's with the music I picked for the ceremony to give as favors... and the next morning, I took the butterflies out of the cooler and got them ready, packed them, my Bible, a blanket and some tissues and headed over... wearing horrible clothes because the ones I planned to wear never got dried...
I've never been so unprepared for anything I've done for Rachel or other babies - ever before. And honestly, I tried to tell people who apologized for not being able to make it that it wasn't for me, and I'm sure nobody thought I was for real - but I wasn't doing the release for me or Rachel - at all. Butterflies have never been a thing for her in my mind or heart - but they are for most other baby loss moms in some way and I came up with the idea for everyone else - not me. I didn't even feel like it was something I wanted to do for Rachel at all.
When I ordered the butterflies, I paid extra to have the envelopes written on. Originally, I had them write "Always in our hearts". I got a package that came with only two monarchs and the rest were painted ladies. (the monarchs are twice as big) I asked for Rachel's name on one monarch and Silas' name on the other - but they got back to me and said all the envelopes needed to say the same thing. So I "randomly" said "Have them say 'God knows my name'". I picked it because I wasn't able to write Rachel's name and that is what came to mind... God knows her name - and He knows each of these babies' names.
Well, on the way to the cemetery that morning, just 20 minutes before the ceremony started, God whispered to my heart what I needed to share.... and before I got to the cemetery, I was in tears. I had a pretty good wall up for my tears because I was afraid if I started crying, I might not stop - but it felt good to let the wall down and feel my real feelings... which were not anger or bitterness, but just sadness and pain. The most I've felt in a long time.
I was planning on setting up under a tree in the field across from Rachel - but my friend Cyndie said she felt like we should be near Rachel. I'm not sure why I was so hesitant, I think I was just so concerned with it being about all the other babies that I didn't want Rachel to be front and center.
I set up my blanket in front of Rachel's stone, opened my Bible and just randomly started to tell people what God had laid on my heart on the way over.
I shared with them that I have spent the last 5 years trying to convince other people that Rachel's life mattered... trying to get them to see her worth, respect her name, honor her memory and be gentle with my heart. And I've come to realize that it doesn't matter what anyone else thinks of her - me - or even what they remember about either of us. God knows her name. He knows my name. And if I love her this much, how much more does God love me? I can't even fathom it.
I talked about how we all post things, trying to get people to understand our pain, to validate our feelings - but it doesn't matter if anyone else gets it. God does. He knows. He cares. And He is with us, even when everyone else disappoints us or misunderstands us - or judges us.
I read a few verses, which are quoted in the video I made and will share below. I read a poem that my friend Chloe had given me for last year's race called Saying Goodbye... and then I told them that I would play a few songs and when "He Knows My Name" came on, I wanted them to one at a time, as they felt led, release their butterfly for their babies. I told them I would not be reading all of their babies' names - because we don't need other people to say their names proudly in order for them to matter. They matter because they were created by God and they are loved by God. And if we are the only ones who ever say their name, that is enough. I encouraged each of them to say their baby's name before releasing their butterfly. Most didn't. Most were content to just have their personal experience with the release and we all watched on - filled with many smiles and many tears at the same time.
A few times throughout, someone's butterfly would land on the ground and I got up and tried to catch them because I wanted to get a picture of one on Rachel's flowers. Every time, I failed.
I went last and as I went to open Rachel's I said "This one is for Rachel."
I opened it and the most beautiful monarch came flying out... and flew up and landed right on Rachel's flowers... It was awesome, but in my mind, being the realist I am, I thought it must just be that the monarchs are slower to fly because they are so much bigger... We all stared at the butterfly for a long time... I don't know how long it was there, but it was a long time. I thought I should move on to Silas' butterfly, but said I felt wrong moving on with Rachel's still hanging out. Then I got the idea that perhaps this one would wake up the same way and hang out too.
As I went to open it, I felt led to do it differently than planned. I said I had planned to release it for Silas, but what was more on my heart was that God was impressing on me that I needed to let go of anything with Rachel's Legacy that wasn't about her or glorifying God. I didn't tell them this, but in my heart of hearts, I was surrendering the nonprofit.
The few weeks prior, all I could think was it is bad enough that she is dead. I'm finally at a good place with my grief where I usually am just happy when I think of her. I very rarely cry and I almost always feel thankful and not sad when I talk about her. And yet I have cried more this summer than I have in the last 18 months over Rachel. I have cried because bottom line is I feel like I have failed at protecting her. And I take protecting my kids - dead or alive - very seriously... as any good mother does. I feel like in starting this nonprofit, I have forfeited my parental rights to Rachel and her name's safety and that is all I can do for her... and *I* picked these people to serve on the board - and look at how horrible I am at picking people for my girl.... I just felt like I had seriously let her down and there was no way to reign it back in now - except to shut it all down and go back to just me, Rachel, God and my blog... where I really help the most people anyway.
I opened that butterfly package, expecting it to join Rachel's on her flowers and that thing flew away as fast as all the rest, while Rachel's still stayed with me on her spot.
It felt so symbolic. I chased around all these other butterflies, just wanting to force a picture of one with Rachel's spot - her stone - her flowers - anything... and I couldn't make it happen... then her butterfly, which only said "He knows my name" and so wasn't labeled specifically for her, but just the one God placed in my hand between the two when I picked it up, stayed there and made a huge impact on everyone looking on... and then the one that in my heart represented the nonprofit... gone like the wind. It just reminded me that Rachel is the only thing out of all of that that is eternal. Only the souls that God creates are eternal. Not her nonprofit, not anything I do in my own strength... and certainly not a board member's husband's opinion of me.
After that, we all stayed sitting for a very long time... and had we had an audience like we do at the race, we couldn't have done that comfortably. But the weather was so perfect, there was a warm breeze and the sun was tucked behind a cloud and we all sat listening to music for a few.. then I shut it off and we all still sat there in silence. It was beautiful and I felt right where I was supposed to be... and so thankful that I can encourage and help other moms feeling the pain of the loss of a child towards healing. Not that healing will ever be complete on this side of heaven, but I think we all felt a bit closer in that moment. A bit less alone. It was an amazing and peaceful silence.
As I drove home, I realized that while I certainly didn't go there intending to get anything, God sure did fill me up as I went to give... even when I didn't want to... to the ministry He has given me. I'm so thankful I did what I said I would and supported these women because it was a blessing to them - and to me as well.
And on that note, I could use some prayer as I decide what to do with the nonprofit and how to do it. I had no idea I would have such a difficult time finding 5 people who are unrelated and have the desire, ability and time to help who are also loyal and will not pull technicalities out to try to rip all I've worked so hard to achieve from me. I accomplished all of this fueled on my deepest pain and missing Rachel through my hardest of days and years. I did it all just striving to allow God to make something beautiful out of my pain and loss. I did it at great cost to my family. And it didn't come easy to me and still doesn't. I can usually say I see things coming... and I saw parts of this coming, but not the extent of what just happened. That was beyond anything my mind can comprehend or my heart can handle.
I just don't want to have any regrets... but I'm pretty sure that in order to protect my girl, I need to do what I do for my living children and keep my parental rights mine. But I also don't know how to let go of all of this, knowing how much I and my family sacrificed for me to get to the point of having a 501c3 and that there were good reasons I worked so hard for it - because it makes it so much easier to help others.
But people are more aware now than ever before of what anencephaly is and I feel proud that I have helped with that in huge ways in this area. I walk into a hospital or doctors office around here and mention Rachel or anencephaly and they know who and what I'm talking about. I know I have not failed - I have started and finished a lot. I've accomplished a lot. I've done all God has asked me to, no matter how difficult (including change the race to a virtual one, even if people didn't like it) - and now I'm just trying to discern what He wants me to do next. And I'm really struggling to know - to hear what He's saying above the fears and reasoning in my own head. Pray that He will make it loud and clear for me and that I will know. I am 100% willing to do whatever He wants me to, including letting go of the nonprofit, if that is what He tells me to do. I don't want anything that isn't from Him or that I can't glorify Him in doing - and I also don't want to give up on something He hasn't asked me to. I am pretty confused by it all and honestly, right now I want to let it go more than I want to stay... I just want to be sure that is where HE is leading and not where my hurting heart is telling me to go. Again, please pray for clarity for me.
In all of this, the constant message that I have been getting from the Lord is that He knows my name. He knows all the details of all that's happened. He knows the past - and the future - all of it. He will handle the things done with wrong motives and He will comfort me and give me peace along whatever path He sends me. He is so good to me and has not ever once let me down.
I went to a Origami Owl party the weekend of my birthday and was planning on just getting a new chain for Rachel's handprint necklace, but fell in love with a bracelet. Cyndie gave me hers and I picked charms and a slider for it. Originally I had a birth stone for each of the 7 kids, but wasn't feeling it was 'right' so I changed it to the heart that says "My Kids", a puzzle piece for me and Matt that says "You & Me" and I took the anchor out of the necklace that Cyndie gave me last year for Rachel to put it in there for God. So it's God, me & Matt and the kids... with a slider that says "He knows my name - Isaiah 43"
And that is all that matters really - Him, my marriage and kids and that He knows our names - here or in heaven.
Here is the video I made for the other moms.