International Kindness Project Day will be on July 27th. It’s a beautiful event that links us together in loss, hope and love worldwide doing something . The Tangerine Owl Project will be out in our community doing our part….. what will your project be? (PS. If you haven’t heard of this yet, check out more info here: http://www.missfoundation.org/support/kindness)
Acknowledgement means so much – this is proof. It’s uncomfortable for some, but it can aid in healing for those who wish to share. Hugo inspires happiness in remembrance to his mother, even if accompanied by a bit of sadness, it is likely so much better than saying nothing.
Since the death of my baby son Hugo earlier this year I have been overwhelmed with love, kindness and support from family, friends, strangers I have met and new friends I have met online.
Very few of these lovely people were able to meet Hugo. My baby was born 16 weeks early and spent the 35 days of his life in a neonatal intensive care unit on a ventilator.
However, all of these lovely people know exactly how much Hugo means to me. They say his name, listen patiently to all the stories I have to tell about his spirited and mischievous character, and look at the many photos I have of my gorgeous son. They admire him, and agree that he was a wonderful baby.
For those few minutes, I feel my face light up and I feel like any other proud new mum showing off my amazing…
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I was honored to be able to be a guest blogger on the beautiful blog Chasing Dragonflies… this one was hard to write because it brought back a whirlwind of emotions. I remember the memorial like yesterday. XOXO to any parents who have had to do the same, and a great big thank you to Chasing Dragonflies for letting me “write it out”. Click the above link to read and then follow the Chasing Dragonflies blog too!
Do not underestimate a moment of your kindness. it has the power to change lives in ways you may never know
As I recall the days in the NICU and the loss of Delilah, I often wonder how I made it through in once piece. Usually I attribute this to my children and my husband. My husband was my partner who was also grieving and wasn’t afraid to talk about about her or to let me feel however i was feeling without question or instruction. Our children were 3 & 4 at the time, and had come to see Delilah a few times at the hospital during hand-off between our parents and us. When we found that she was too sick to make it, we called everyone to the hospital and told them there that her condition was deteriorating and we were going to turn off the machines that afternoon. Our 3 year old saw all the tears and it evoked that same emotional reaction in her, not because she totally understood what was happening, but because everyone else was so upset…. but our 4 year old grasped this concept, heartbreakingly clear in his response: “So she’s never going to come home with us?”. We nodded and hugged and his face filled with tears as he said that he wanted her to come home with us so he could play with her and share his toys with her. Our pastor performed a baptism for Delilah with everyone there and then our family each took time to go in and see her one last time on their own, because when we shut off the machines my husband and I wanted to be the only ones in the room (besides any necessary medical staff). And then it was time. Time to let her go. We got to hold her without the tubes, which we had never done and she was so purple and bloated because of the sepsis she didn’t even look like herself, but it didn’t matter. She was gorgeous. We did get to see those eyes, those beautiful eyes that Delilah had open one more time for us as we talked to her and rocked with her. She knew we were there. And then she was gone. It had been 27 days since she was born and I’d spent nearly that entire time by her side, and now she was just gone. I wasn’t in denial of anything, but that pain was unbearable, so then I did the only thing I could do at that point; I started working on the plan. You see, I was an event planner by trade, running my own business for the last 8 years, mostly tending to weddings, but it was what I did. It was something I was good at, and something I enjoyed, and now it was a coping mechanism. There was never a question in my mind that we would have a memorial. She deserved to be shared with our family, she deserved to be known and acknowledged, even if her life was short, it meant something. So that evening from our hotel room, I got to work on the most important event thus far in my life.
It started with where she would be buried….we decided to place her grave in my hometown. We had lived in Champaign/Urbana for the last 8 years, but it was not our permanent home, so we didn’t want to bury her there knowing we’d leave. The hospital I’d delivered at was an hour and a half away from there, so that was completely out because we had no ties to it. Well, that plus the fact that my husband and I would’ve been happy to see that city firebombed to the ground for what we’d just gone through…… (relax ppl, we would never cause ACTUAL destruction, but man did we both want to at that time). My husband grew up between southern IL and his folks were now in Indiana which we didn’t get to often, so the most rational option was my hometown, where my parents still lived, along with a ton of my extended family, and a place that we visited frequently. It was only a few hours away, which was close enough for us, and I remember feeling that it was good because others would be there for her even when we were not. I got a referral from my mom on a funeral home who was going to work with the hospital to transport her body. We picked out a tiny casket for her, because there wasn’t really that much to choose from to begin with when they are that small. And then it was onto the most important things….. the venue, the ceremony, the flowers, and the music.
That’s insane, you may be thinking…..Why do those things matter? Well, they don’t matter to everyone, but they mattered to me. The reason they mattered was because it was important for us to share our little girl with those who had never met her. It was symbolism at it’s best, because that was the only way to do so, with the exception of sharing our stories of her. A baby is a baby right? And who wants to talk about dead babies? Just make them go away, its too sad a thought…… To all of that i Say WRONG. As in life, babies have entirely different personalities, and should be treated as an individual in death. You’re right, no one wants to talk about dead babies, it IS sad and wrong that they die without a chance to experience the world, but it happens and she deserved recognition for her life, just as anyone who lived 115 years does. I didn’t care if its awkward, she was going to be remembered, even if we were the only ones who showed up at the memorial (we weren’t).
Now, my husband’s dad was a former Presbyterian pastor. He had married us at a little chapel in my hometown, in front of 175 people almost a decade ago, so it was fitting that we would share that same space with our daughter and our other children as well. It was beautiful and was filled with the warm memories of the wedding, actually making it a tiny bit less painful to be the place we say goodbye. He would co-conduct the ceremony with our pastor Heidi who had made weekly trips to Peoria to see us and the baby while she was in the NICU. She knew our family well and I am forever grateful that she trekked to the burbs to do this for us, but it was equally meaningful to have someone who had been one of the few people who had actually met her to be doing the ceremony along with my father-in-law. They could speak for her knowingly, not just from what we told them about her, they had connection to her, and the words would be true and do her justice, as well as sharing her with those who never got the chance to meet her.
We had chosen my cousin and her husband as Delilah’s godparents when she was born (an easy choice as her two siblings were already the godparents of our other kids). Her husband was a talented musician, and we had asked if he’d be comfortable performing at the memorial, to which he kindly agreed. We chose the song “Hey There Delilah” by Plain White Tees as it had played a small part in her naming, because honestly, I just really liked it (the name and the song). We found out shortly after she was born that the nursing staff had sung that to her as they got her situated in her NICU room. it WAS for her. I wrote a letter to her as did my husband. He was brave enough to read his at the service, but I was not able, so i had mine read by proxy. We had picked poems and readings that seemed well suited for her, and left the rest up to the resident officiants.
During our time in the NICU I was lucky enough to have a staff member suggest having pictures taken by the Now I Lay Me Down to Sleep organization. I will never be more thankful that professional photographers volunteer their time and skills to families going through loss. Our photographer was wonderful and had made it out before Delilah passed. Afterwards, she had compiled the images into a beautiful slideshow and set it to a hauntingly touching song. I had watched it many many times at home, alone, sobbing my eyes out, almost forcing myself to experience the pain of her loss over and over again, but it was so remarkably done that I knew it was perfect to show at the memorial. I knew I would not possibly be able to hold it together when I heard that first note of the music and when I saw that first image of a stuffed giraffe she got as a gift, but it was such a tribute to her it didn’t matter.
The flowers were another piece of the puzzle, but I didn’t agonize over that. Orange lilies were it. Not only were they my favorite flower (inspired by my wedding planning days), they were vibrant and fragile just like our daughter. Delilah’s middle name was Evangeline and my husband had nicknamed her Lily for short as he spoke to her through the NICU isolette which made it an even more perfect choice.
We had everything in place, and the day came to lay her to rest. Valentine’s Day. You may also think this is insane, but she had passed away on the 10th of February, and I couldn’t think of anything better than to celebrate the love that we had for her. I knew it was setting up to be a bittersweet day for the rest of my life whenever February 14th hit, others would be out celebrating with their significant others, and gushing about flowers, chocolate and bling, and I would always be reminded of our loss, but strangely that didn’t bother me. At least there would be beauty around as well.
I had decided to get my hair done that morning and as the stylist asked if we had special plans for the day I found just enough voice to whisper that we were burying our daughter that morning but that I wanted to look my best for her. She nodded, and said she’d make sure my hair looked lovely for her, and it did. They probably thought I was nuts, I didn’t know if she would be watching over us that day, but if she did, I wanted her to know how much I cared. I cared about my appearance on the worst day of my entire life. I didn’t wear black that day…instead, I wore a bright fuschia dress because my daughter was anything but dull and frankly I wanted to celebrate her vibrancy and her unwavering boldness in all she did, plus it was a nod toward the holiday that celebrated all things LOVE.
When it was time to leave for the morning’s events, I almost collapsed into a heap coming down the stairs at my parents house because I didn’t want to….I couldn’t…. go through with saying the final goodbye and watching that little tiny casket be placed into the ground. We did the actual funeral only for our little family and our parents and a few of my cousins who may as well be our immediate family, but everyone else would be at the memorial immediately following. and They were there. We had family fly in from other states just for a few hours to be there. Not because we made them, but because she had touched their lives and they wanted to be there. There were others who made the trek from Champaign to be there, and I couldn’t fathom at that time how much of an impact she had made. I somehow made it through the memorial, I even found myself laughing as my goofy cousin cracked a joke, which was exactly what i needed at that moment. It was more emotionally charged than I imagined, but it was perfect. All these small details that may seem strange to anyone else made perfect sense to me, and they all added up to giving others a little taste of what Delilah was like as a person. They were the right choices then, and they are still the right choices now. We mourned. It was sorrowful and beautiful and angering and fulfilling all at the same time, but it was perfect. It was perfectly right for her and for us, and that is all that mattered.
A blog post a mommy friend of mine…. she is so strong and I am proud of her for expressing her feelings, and finding her voice even through heartbreaking loss.
I went to BritMums Live with a great deal of trepidation. I’d been in a deep depression since the death of my baby son Hugo in March this year, and developed anxiety issues that mean I sometimes feel unable to leave the house.
The kind and generous Kylie from Not Even a Bag of Sugar had offered me a ticket. I was interested in the Inspire sessions at the conference and how to utilise my blog to advocate for change, and raise awareness of issues.
The conference was the first significant thing I had done since Hugo died, so I was terrified.
However, I was determined to do this for Hugo so I put on my favourite dress, made myself look presentable, and got on the train to London.
I received a warm welcome when I arrived. I’d made eye contact and exchanged smiles with a few other women, but…
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Sometimes the baby’s fight in the NICU isn’t the only one preemie parents are going through.
Since diving head first into the world of supporting parents, NICUs/preemies, and the issues that can arise during and after pregnancy, I have seen and heard many varying experiences from parents, mostly moms, one underlying theme has moved me. ADVOCACY. Advocates for their own care, advocates for their child’s care, advocates for change. I’m going to talk specifically about pre-eclampsia here, but the underlying theme remains the same in any case, at any time – If you don’t think your concerns are being heard, FIND SOMEONE WHO WILL LISTEN.
Now, pre-eclampsia/HELLP syndrome is not just high blood pressure and a bit of protein. These conditions can be fatal, or at the very least can cause other dangerous ailments for all involved. Its not my intent to scare, but often times, we don’t know or learn about it until after the fact. I cannot tell you how many stories I have seen from women worldwide who are being told they don’t have pre-e, or yeah, their blood pressure is high, but no protein so go on home and rest…… to be left with staggering outcomes. We can change that, but only if we take some initiative.
Some mothers listened to their gut feeling that there was something more despite assurances that everything was “fine” from their doc, They spoke up and DEMANDED rechecks, second opinions, new providers, and/or whatever else they could do. Some were argued with, some were flat out disrespected and talked down to, some provide their own proof backed with vitals and stats yet still were not heard, and that ladies and gentlemen, INFURIATES me. I was lucky enough to have providers that cared, paid attention and did the digging when I was oblivious to my own condition. In fact, I never even felt sick…. so I would’ve probably continued to go on with life and could have had a stroke later….We aren’t all lucky enough to have great docs that pick up on this from a simple statement as “my ankles are swollen, but otherwise I’m ok” and figuring out there was more going on, and it probably saved my life, but it couldn’t save my child’s…. and every now and then I still wonder if maybe I’d picked up on these symptoms earlier I could’ve changed things. That’s the way things SHOULD go, but it isn’t always the way it does go.
It’s upsetting to think that the ones who are supposed to be watching out for us aren’t always right. That’s not to say that they are going out of their way to be negligent, that’s not usually the case… but there are times when things are overlooked or disregarded for whatever reason (overworked, undereducated, etc.), There is no excuse, but it does happen, so I am here to tell you what you can do for yourself.
GET EDUCATED and ASK QUESTIONS: FIrst and foremost, learn the signs of pre-eclampsia. Headaches, Visual Disturbances, Swelling in hands, face and/or feet, and just some of the symptoms. More information can be found here: http://www.preeclampsia.org/health-information/sign-symptoms
Learn what to look for so you’re not caught up in thinking that these are just “normal” pregnancy related things. I’m not trying to turn you into a hypochondriac, but I also didn’t know how often this condition is undiagnosed or done so too late. Don’t be afraid to ask if you have questions, I promise you your concerns are not dumb, no matter how small, in fact they could bring about a way to monitor progression. You cannot be too cautious. Do be as kind in your words as possible, and remember that your docs are human, so treat them like one, even if you feel they are wrong.
That said, FIGHT for your care. If your doc won’t listen, then perhaps you need to be seeing someone who will, whether that’s a junior doc, a social worker, or a different practice altogether. We CAN “fire” our doctors. It’s not fun or clean, but in the end, if you have done all you can to take the best care of you and your baby possible doesn’t that matter more? There is a reason we have “mother’s intuition”. I want to thank the moms who have fought tooth and nail when they thought something was wrong – I hope it gives others the courage and inspiration to do so as well.
We have officially scheduled the Tangerine Owl Project Blood Drive in honor of Griffin Maks!
Date: Tuesday July 29, 2014
Location: Oakton Community Center (Program Room West); 4701 Oakton St, Skokie, IL 60076
Appointments can be made prior to the date by following the link below and creating a login to schedule your slot. Appointments are not required, but will help those in need of a specific time frame. Walk-ins are welcome.
Treats, and family friendly atmosphere will be provided, so feel free to bring the kiddos along.
Our goal is 50 people, but we’d love to bring this community together to knock that goal right out of the park!