Join us Saturday, June 17th at 6:00 pm for the opening of the gallery display of the Rainbow of Hope Project. Saturday night after the opening, the project page will launch with much more on this project including bios on each of the moms involved in the project. Look for the Rainbow of Hope Project tab at the top of this webpage.
Can't make the gallery opening? Join us on the Dear Olivia Madilynn facebook page for a live video from the event.
Something I wrote last year....
Twice. Lighting struck me twice. In November 2011, I was unsure whether I had been feeling my daughter Olivia move and then one morning I didn’t feel right, not knowing that I was going into labor. When we got to the hospital we were told those terrible words no parent wants to ever hear “Your baby no longer has a heartbeat.” Early the next morning, Olivia was born sleeping, my future with her disappeared. Every hope and dream gone.
Two months later there was new hope, new dreams as I learned I was pregnant with my son Asher. Everything seemed to be going well until we learned he had a very critical congenital heart defect (CHD) 26 weeks into the pregnancy, right around the time we lost his sister. After going through a fetal intervention, the future seemed brighter, there was hope. Asher was born in September 2012 and was doing great overcoming his CHD obstacles but that was until he developed blood clots. We ended up losing our second child to these blood clots, 11 months from the day we lost our first.
At first I focused on starting a foundation to spread awareness in children’s blood clots. This kept me busy for several months after the loss but once it was established and we had our first event, I had some downtime and that is when my World came crashing down. I hadn’t grieved the loss of my daughter and now I needed to grieve the loss of my son. All I could think was that I was a mother who lost both of her babies and how was the World going to understand that. So I made sure they understood. I made it my mission to help others understand baby loss, grief and remembering babies lost. I was going to remember my babies in every way possible and I didn’t care what others thought. I also decided that I could still have a relationship with my babies even if they weren’t here. I know they are here with me in a different way so I talk to them and make them part of my life.
I got involved in the support group for CHD, Mended Little Hearts and continued to build my own foundation, Asher James Foundation. I became the bereavement coordinator for Mended Little Hearts and this completely changed me and helped me heal. I was able to meet with other moms who have had a loss to CHD and help them through their grief. I took on other projects to promote a mother’s grief too (Grief: A Mother’s Journey).
I decided that I could either become depressed and let the loss of them destroy me or I could live for them. My life became a love letter to them. I decided that any opportunity I was given I would not pass it up, I would face fears and do things in memory of them to help others and I would help educate others to help understand this World that so many have been so silent about.
I have learned on this journey to do what makes me happy, what is best for me, not care what others think and to remember my children however it feels right to me.
It has been 3 ½ years since the loss of my son and I am now expecting my rainbow, a daughter due in August. It is completely terrifying knowing that I could very well lose her too but I also know that she has two little angels looking over her and protecting her. That brings a whole lot of comfort.
With getting ready for Nina's arrival, that meant going through all of Asher's things and trying to figure out what to do with them. This has been something I have been dreading. Everything was put away in his closet so I didn't have to deal with it. He never came home and never wore any of his clothes but they were still his. I asked for ideas on facebook and there were many different ones suggested. I decided to go with having little tags made and donating many of the items and I picked out a few pieces that a friend is making into a stuffed puppy. I was actually surprised at how many of the items were neutral gender and some were blue but it's my favorite color and with a few cute headbands, Nina will look absolutely cute in them.
I had these adorable iron on labels created by an Etsy shop (boodybabies). They really turned out perfect.
Ironing them on was probably a little more difficult that I though it would be because baby clothes are so tiny and it's hard to get the labels in. I just turned the outfits inside out unless they unsnapped or zipped.
Communities for Positive Youth Development Coalition was holding a baby shower for teens at Trickster Gallery so I decided to donate the items to their cause. I made up 6 gift bags that each included a stuffed animal, blanket, 4 outfits and bibs.
I think Asher agreed with my decision because I received several signs from him throughout the day. People have always been generous and supportive of us through Team Asher and now with Nina so I always want to give back when I can.
These kids with the Youth Council are doing amazing work and I hope that some of Asher's things can help someone else.
I am so honored and grateful that Chicago Parent magazine let me share my story and what I do for Mended Little Hearts.
Every year for my daughter Olivia's birthday, I try to do something to celebrate her in some way. We always do something together, my husband and I together on her birthday and I have a tradition of making her a cake and doing a craft in her memory. This year I came down with the stomach flu a couple days before her birthday and was still feeling exhausted from it. Since I was tired and didn't feel up to doing the traditions,, I decided to have a week of Olivia.
On her birthday, November 23rd, my husband and I went to iPic theater to see Mocking Jay Part 2. If you haven't been to iPic and have one in your area, you should go. We love the reclining chairs and having food brought to our table and free popcorn of course. Who doesn't love that. I had truffle fries and pretzels. So good!
This year I have fallen in love with Jamberry nails. I love all the different designs. A few months ago I had a party and made sure to get some butterfly jams for Olivia. I always think of her as my little butterfly. These were my most favorite jams so far and I got lots of compliments on them.
My charm bracelet that holds Olivia and Asher's footprints (actual prints shrunk down), their pictures and other meaningful charms broke a few months ago and I needed to have all of the charms transferred to a new bracelet. During Olivia's birthday week, I made time to go get it fixed. I can't even believe I went so long without it.
From Olivia's 1st birthday, it has always been a tradition to make a cake on her birthday. Since I was still exhausted from being sick, my husband and I went to Whole Foods and we each picked out a slice of cake. He got vegan cookie dough cake and I got cheesecake yellow cake.
Last year Olivia's auntie created Olivia's Blankets in her memory. Olivia's Blankets is a receiving blanket cut in half and then tied back together. They are folded nicely and packaged. The blankets are donated to hospitals and are a part of Mended Little Hearts memory boxes for parents that lose a child. The concept is that the parents can wrap their baby in the blanket while they spend time with their baby and when they have to say goodbye, they can keep half and leave half with their child so that they each have a piece of something.
Last year I started a blanket drive for Olivia's birthday and continued it again this year. By her birthday we had received 108 blankets and blankets are still being collected. This year we got a Molly bear for Olivia and I loved that I could include it in her birthday.
With Olivia's birthday the week of Thanksgiving, that means her and Asher's tree gets put up during her birthday. Last year I bought a white tree right after Christmas. I love it but it may be too small for all the ornaments I have collected already for them. Every year I purchase an ornament for Olivia and Asher and friends and family usually give us some as well (they are well loved ). This year I found the most perfect ornament for Olivia. It was an elephant with a crown on her head and a tutu. When we had our gender reveal party we had a boy and girl elephant with a crown on each of their heads as the theme. It's become one of the things I associate with Olivia but is usually hard to find. When I found this ornament I also found a gold crown ornament and thought it would be perfect to use on her cake.
I wanted to make a homemade vegan cake for her birthday (my husband is vegan) and I wanted pink roses along with the gold. My icing decorator broke in the middle of making the cake but it still turned out pretty cute.
picture above is of the other candles she has made (she started on Olivia's 2nd birthday). I had no idea she had this tradition and it was really nice to see that Olivia touched her so much to have a tradition like this.
I hung the cake topper/ornament on her tree with the ornament I made for her last year. This is the little elephant from her gender reveal party. I made the little tags that were on the cake with gold glittered scrapbooking paper and gold scrapbook letters and little hearts. It was actually some leftover stuff I had on hand.
paper I wanted to use. I ended up painting a canvas pink and then realized that the paper I chose for the elephant matched her baby blanket. I used four gold butterflies since it is her 4th still birthday. After I added the butterfly and elephant, I thought it looked bare and boring so I started adding words that describe where I am at in my grief. I love the way it turned out.
And lastly, I was brave enough to share Olivia's picture for the first time since her funeral. I am such a big advocate on baby loss and sharing your story and doing what is best for you, yet I had never shared my own daughter's picture. I was always afraid of someone judging or criticizing her but our community understands and has been there, and is filled with so many loving and supportive people and I couldn't ask for much more than that.
Things may not have gone the way I wanted on her birthday but I think the week turned out far better than I could have ever expected.
Dear New Co-worker,
I know you may be wondering why I have pictures of a baby in the hospital framed in my cubicle. I know months later you might be wondering why those pictures never get updated. You probably have all of these questions and aren't sure how to ask. Well, my baby died almost 3 years ago. He was the love of my life and when I look at his pictures I see right through all those tubes and wires that so many can't look beyond. When I look at him, it is a reminder of how you can love someone so much even if they are no longer here. My love for him and his sister who is also no longer here will continue until the day I die.
Don't be afraid to ask me about the pictures. I am an open book and will probably tell you way more than you ever wanted to know. You may feel overwhelmed but just be respectful that I don't get to tell stories of activities my child is in or the presents I'll be buying them at Christmas. Instead I'll fill your head with awareness on CHD, stillbirth and blood clots and tell you about all the events I have going on in their memory in hopes that you might be interested in attending one. My children left an amazing legacy and I'm not afraid to tell you about it.
I just ask you that if the photos are hard to look at, then please don't comment that to me. If I tell you my child's birthday or angelversary is coming up, please let me know you'll be thinking of me and maybe even leave me a card letting me know you are remembering them too. I won't be at work on those days. Please don't feel uncomfortable around me, this is my life and I am used to it. I don't feel uncomfortable with your questions or telling you my story. And you never know, we may end up having similar stories or you may know someone close to you with a similar story.
Your Bereaved Mom Co-worker
The day Asher was born was a beautiful day despite the rainy day we woke up to this morning. I was moved to Labor and Delivery around 1am and by 6am the first contractions had started. It would soon be a long day waiting. You think to yourself that it's the second time around and it will go pretty fast but that was not the case.
I spent all day laying in bed trying to sleep while family sat around patiently waiting for Asher to arrive.
I had the best two guys watching over me.
At around 2pm, my impatient doctor (not my regular doctor) came into the room and told me that I was dilated to a 9 and that was close enough so it was time to get the show started. He told us the team for Asher was standing by and was ready to go. I thought Well he is the doctor so he knows what he is doing.
The nurse came in and got me all prepped to start pushing and then the doctor disappeared. Out of nowhere a student nurse came in. She told the nurse her name was Olivia and she was sent over to help. It was so crazy how she came from nowhere.
For the next 3 hours I would continue to push with no luck of delivery. The doctor finally came back at 5pm and said we could use forceps to assist in delivery. At 5:22pm, the most beautiful little boy was born. Born with a full head of hair just as I had dreamed. We heard his little cry once before he was silenced with a breathing tube and whisked away to the hospital next door.
But before he was taken away, I got to touch him and look at him. I never got to hold him but I got to admire him for a couple minutes before he was taken to Lurie Children's Hospital.
I can't believe that in 2 weeks Asher would have been 2! There are still days that I can't believe I don't have a 2 year old running around and wearing me out. Every day at some point in the day I tear up thinking about him and what life would be like with him here. Instead his second birthday is coming up and we will be celebrating him whether he is here or not.
Last year we did an array of different things in memory of his birthday and while they were fun, they were also exhausting. So this year I decided to skip all the week of events to celebrate and remember him. But that doesn't mean that things can't be done to celebrate his life. Anyone can do their own thing - balloon release, sky lanterns, light a candle, etc. If you do something in memory of his birthday, please share it with us.
Last year we went to Lake Michigan and did a sky lantern release. It was a lot of fun and really amazing to see. We are lucky that Lake Michigan is a short drive from us that we could drive up and come right back.
Some of the other things that we did last year was have everyone wear blue or yellow on his birthday and post a picture and write Asher's name and share a picture.
This year one of the things we are going to do is hold a Team Asher 6 week photo event starting on Asher's birthday September 10th and going until his Angelversary on October 23rd. We want to collect as many Team Asher pictures as we possibly can during this 6 weeks. We want to receive photos from every state and all over the World. You can join the photo event by going here.
We would also love to spread children's blood clot awareness during this time too. If you would like more information on this please visit Asher James Foundation's Team Asher page here. The idea is to have different people take a Team Asher picture and share a "Did you know" card about blood clots. If interested in helping with this project, please message me and I will send you some cards.
"Continuing Asher's fight"
I really love working on the Prayer Flag Project and making a flag for Olivia and Asher. Last year was the first year I participated in the project and I was really in a bad place with my grief. Setting time aside to make something in memory of them was so healing. I ended up making 5 flags total. This year it took me awhile to decide what I wanted to do for each of their flags.
I knew that I wanted to use materials that I had since I usually pick up things that remind me of them throughout the year. I gathered up all the materials that I had on hand that looked interesting to me and then sat down and drew out what I wanted each flag to look like. I knew I wanted Olivia's to have a white butterfly with a bunny and Asher's to have a giraffe with stars. I did a google search to find images I could use as a template for the items I wanted to add to the flag.
I did Olivia's first and actually changed what I had in mind throughout the process. My original plan was to have a white flag with the floral fabric being the bunny but at the last minute I decided to switch it. I did a mix of hand sewing and hot gluing for this flag. The top is hand stitch to hold the ribbon and the bunny is hand stitched. The butterfly is a scrapbook sticker that I hot glued. There is 2 kinds of lace, some beading and rosette ribbon that is hot glued at the bottom. The bunny's tale is some ribbon that I used on her flag last year. I bunched it up and hot glued it into place. The lace at the top is also hot glued on. This flag seriously took me about 15 minutes to make.
I also wrote a letter to her, something I haven't done in sometime now. I wrote the letter on a piece of fabric I had and hot glued it to the back of the flag. I only hot glued it at the top because I didn't want the glue to show through to the other side.
Asher's prayer flag was originally going to have one giraffe looking at the stars but then it became a family of giraffes (our family). I really love the way this flag turned out. There are two stars to represent the number of years he has been gone. We always called Asher our little star so stars will always be included in his flags. This flag took a little longer just because of the cutting and stitching of the giraffes. They are hand sewn on along with the moon. Everything else is hot glued on - 4 different ribbon and stars.
Asher's also has a letter glued on to the back of the flag. It's funny cause I wrote their letters weeks apart and the letters pretty much say the same thing - Asher's has a little more promises to enjoy life and be happy.
I cut a piece of ruffled fabric to put in between the two flags to separate them.
I hung mine in my house next to last year's flags. You can see last year's flags here.
For our vacation this year we drove from Chicago to the South Haven, MI area with our two boxer lab mixes Socks and Boots. We rented a dog friendly home in Bangor on a horse farm. We had booked this place for a weekend last year and wanted to stay for a week over the summer. We live in a townhouse so our dogs loved the grass and space to run around.
Our dogs even made a friend with one of the dogs on the farm.
All the Lake Michigan towns have cute little downtowns with outside seating areas. We took the dogs for a stroll down South Haven's downtown area and to the lighthouse. We got food from one place in downtown South Haven but we placed an order to go and took it back to our rent house. My husband is vegan so we had to also look for vegan friendly places while on vacation.
There is a small dog beach in South Haven but when we went there this year, the beach was washed away. We also went to another beach nearby and the same thing (Saugatuck I think). We did however, find a dog beach in West Olive, a little past Holland. Kirk Beach is $7 for non-residents and is about 1/2 mile hike from the parking lot. We took our dogs there a couple of times and they absolutely loved it.
One of the other places we went to was Dutch Village in Holland. We only walked around the shops but dogs area allowed to be outside the shops and it mentioned online that they were allowed in the amusement area. Holland claims to be very dog friendly.
Not all beaches are dog friendly so check the area before you go but most outdoor things are dog friendly and there are a lot of dogs in the area especially the downtown areas. We also took our dogs to the Kal-Haven Trail. It is a 30 mile trail that goes from South Haven to Kalamazoo. By the end of the trip our dogs were pooped out!
This website was originally started as a letter to my daughter Olivia after she was stillborn but then I lost my son Asher to CHD (congenital heart defects). It has become more of scrapbook for the things I do in their memory and the amazing opportunities that come my way.
I'm not much of a writer so I hope you find inspiration in the photos and crafty things I do in Olivia and Asher's memory.